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Living the Could Life episodes

September 29 Your Travel Mini-Kitchen Saves The Day
Should You Travel With a Mini-Kitchen?
Traveling with dietary issues requires special planning. One thing to consider is a mini-kitchen. Especially when you need food to maintain a healthy dietary condition, consider packing a few mini-kitchen items.
What should my travel mini-kitchen include?
For those with dietary needs, restrictions and issues, the importance of this add-on is significant. Are you always scrambling to find products and equipment to make your life easier. In this episode, we discuss some of the items that you might need to ease your travel with a mini-kitchen.
However, what you add to your person mini-kitchen is up to you. You can make it as big or small as you like. After all, the reason to travel with a mini-kitchen is to customize it to your personal needs.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
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Welcome back to Living the Could Life. Today, we're going to talk a little bit more about traveling with the food that you may need for your health conditions or for your nourishment when you travel. I'm Teresa.
19 min
September 22 Traveling With Dietary Issues
How to prepare for traveling with Dietary Issues
Traveling with dietary issues may discourage some from traveling at all. Fortunately, there are many ways to plan ahead if you have dietary issues, a problem that some find embarrassing, limiting and depressing
But, there is hope in the travel world for those willing to make some changes in how they are traveling with dietary issues. In this episode, we offer several suggestions. As with any type of body disruptors, changes need to be made. If you are willing to make the effort, you may benefit from some of the suggestions that we have made. Fortunately, you will be able to prepare yourself for traveling with dietary issues
Check the show notes for a free downloadable printout to help you plan yourself for traveling with dietary issues. Happy Travels.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Welcome to Living the Qud Life. Today, we're going to talk about traveling with dietary issues, and those can be chronic issues or random acute issues. It can be allergies, it can be digestive issues, it could be things like Crohn's, or it could just be that your system doesn't like certain things.
So we want to treat food just as we would any other logistics for travel. So you'll need to plan ahead, pack intentionally, research your destination's food landscape, and have a reliable backup system. This will reduce stress, prevent emergencies, and keep you nourished even when options are limited.
We're planning a trip to northern Italy in a few months, and I have started transitioning to a strict vegan diet, and I'm a little concerned about how I'm going to be able to maintain that diet. And I'm also thinking about how other people, when they're traveling, might have very restrictive diets and how that's going to work. Right, and that's something you can't just wait until you get to Italy to think about.
I mean, things are different there. And already, I like to have a place, especially when we base ourself in a hub and are in a place for several days, to have kitchen access. And that's especially good when you are following a certain diet.
And if you need to take certain medications that need to be refrigerated, maybe, like for me, tea makes everything better, so having a kettle is good, having a microwave is good, especially if you don't want to go out a lot, or if you have certain favorites that you like to cook no matter where you go. Some of those may not be available locally, and you can do your research before. I'm working on a book about using AI to plan travel, and for our upcoming Italy trip, we are using that to find out where we can find certain things.
And I think we're going to Parma, and I think that will be a real challenge for Robert. I will follow along with his diet, but there's like cheese and prosciutto, so we may have to eat separately. That kind of brings us to the core questions that are going to shape our entire food plan and sort of general food plan for anyone who's traveling with dietary issues, concerns.
And the first question is, will you have kitchen access? Will you have a fridge, a microwave, a kettle, or even a full kitchen? And this is going to determine how much you need to pack and prep.
And some things you do automatically if you're used to it, but especially when you travel abroad, you don't know exactly where you might find gluten-free, low sugar, no sugar, no oil, dairy-free. I mean, if you have lactose intolerance, will that be in the refrigerator at the local supermarket like it is at home, or do you have to go to a separate store to find things like that? So it's just good to plan.
And then one thing that I think both of us have learned is that you can only take care of yourself. Nobody's going to take care of you, so don't assume that, oh, we'll just go to Italy and we'll find what we need. We can find stuff to eat on the plane.
Don't do that. If you need certain foods, say you have hypoglycemia, you have to eat regularly, don't count on getting food on the airplane. You know there are times, oh, we ran out of a certain meal or they forgot to load something to the cart.
So be responsible for yourself and always have your little emergency snacks or medications with you. And I've been thinking about that. I'm going to order a vegan meal for the plane trip across and then coming back also.
So I'll see how that works. That's the first time I'll have done that. Some destinations can be extremely accommodating.
Italy has a gluten-free awareness, so I'm going to be interested in that. I'm not gluten-free, but I'm just curious to how they're approaching that. And then there's other things too you need to think about.
If you have allergies, and you know some people can say, oh yeah, this is gluten-free or this hasn't been mixed with nuts or any other contaminants that may upset your system, you do need to carry your own EpiPens, antihistamines, and you know some people wear the bracelets, especially traveling abroad. Take all of your medications in their original packaging. If you are going to bring some food with you, you need to be aware that some countries do restrict meat, dairy, and fresh produce.
So you need to check the rules before packing any of those items. It's just always good to have backup supplies. I remember one time we were taking the train from Seattle to Portland, and the train just died.
And even though the train was kind of dying along the way, nobody thought about having buses ready to meet us along the route. And one thing that was really interesting was they had provisions on board the train that were designed for just this kind of emergency. However, their food provisions had expired two years earlier.
Right. So some of the things, you know, it's not like it was refrigerated food, but maybe starving could be a better option than eating the expired food. And, you know, nobody showed up with like, oh, you guys haven't had it.
It was also very hot in the train and nobody showed up with water or anything like that. So you really need to plan for those worst case scenarios, delays, closures, limited stock. And an important thing is to build redundancy into your food plan.
Exactly. I go in with the attitude that really nobody cares about me, so I need to take care of myself and plan for the extra snack or the extra water, extra food or whatever it is. So what you need to do is, or a recommendation, you don't need to do anything that we say, but in the first 24 hours, think about what you will need then when you arrive in a new destination, what you need for daily staples or emergency backups and medical essentials.
So this is going to be packing and you need to think about this in layers. So packing in layers and packing for your first 24 hours is what Teresa is talking about. Take things like, I guess, those provisions on the train, like things that are stable and don't expire or haven't expired.
So maybe like nuts, dried fruits, granola bars, maybe candy, sturdy vegetables like pre-washed apples, carrots. And again, just be careful when you arrive in a different country, they may not allow produce. Right.
And then maybe have some meal replacement. Like Ensure, like the milkshakes or those shakes, but you may not be able to travel with those in your carry-on luggage, right, because they're large. Correct.
Although they are medically necessary, I wouldn't trust it. Traveling with kids, you know, they also have dietary considerations, you need to take care of, so be sure you pack and are prepared for them. And then you also need to think about further along in the trip, you need to pack smart staples.
And those are things that will travel well and fill nutritional gaps. Things like rice crackers, dried soups, boxed beans, microwavable grains like oatmeal, rice, shelf stable proteins, tuna packets, jerky, shelf stable tofu, specialty items that sometimes are hard to find, gluten-free bread, dairy-free snacks. Just be sure if you have any perishables, you pack those safely.
You might consider vacuum sealing proteins, taking things that last longer, like yogurts, fruit or cooked meals. Use insulated bags or ice packs while you're traveling. And depending upon where you're going to stay in your hotel rooms, if you don't have, if you don't have a kitchen available, you could sort of build your own mini kitchen.
You could take travel size oil, vinegar, spice blends, collapsible containers, mason jars, maybe a small knife and a cutting board, tiny can opener, sporks. But watch out, you know, with the small knife, don't put it in your carry-on. If you don't have a room with a kitchen, and even if you do, you might want to wait to buy things like oil and vinegar.
Besides foods and a mini kitchen, be sure you have your medical and communication essentials with you. Everybody doesn't know what your needs are or what you may be allergic to, so maybe you want to take two EpiPens and keep those in a carry-on, not in your truck luggage because they'd be useless. Allergy translation cards in the local language and a printed allergy plan.
Like I said, some people do wear the bracelets. Then carry along things like hand sanitizer. And disinfectant wipes.
And disinfectant wipes because you know how well they clean planes. You'll want to research your food options at your destination. This will help reduce uncertainty and build confidence.
You can look at what the local cuisine will entail and find out what ingredients are common, are hidden, maybe unavoidable. For example, in Japan, they use seafood in many different broths. And like we said before, Italy is becoming highly gluten aware.
And that's something I'm also looking forward to trying, to see just, you know, what the difference in taste is. And even though I don't need to watch out for gluten, it's just nice to know what kind of substitute that is. And especially when it comes to your digestive system or your health.
The last thing you want to be is sick or spending hours in your hotel room or in the bathroom. And that is another thing to check on. If you have digestive issues of any kind, search out where there are toilets.
There is an app, and I can't remember what the name is. I'll look it up and put it in the show notes. But there are other apps too.
So if you're looking for vegan, vegetarian options, and this is a worldwide spotter, it's Happy Cow. There's Allergy Eats for allergy-friendly restaurants. Find Me Gluten Free is a global gluten-free dining app.
And then there's another that can scan packaged foods for allergens. That one is called Content Checked. And then be sure you use translation tools too.
When we were in Europe, the nutrition labeling was quite different from ours. And I was quite impressed with the EU program in which they were labeling foods from giving it a grade A down to a grade E, I think it was, on how often you should eat it and how healthy and nutritional it is. I think they say how much energy you get out of it, which actually means how many calories.
And I want to say they use kilocalories or joules, different than us.
[Speaker 2]
Do you remember?
[Speaker 1]
I don't, but I remember it was quite different from how we had organized our nutrition labels. Right. It's very different.
And then one thing to be sure is like a translation app is really good. Like there's Google Translate and there's others. And you can get pre-written dietary cards at celiactravel.com.
And that's just good to have because if you have an incident and pass out or something happens, somebody could maybe see your card. So keep that handy. You can also contact your accommodation place ahead.
Some will have restaurants along with your lodging. You can ask them, can they prepare special meals? Do they have a fridge or microwave?
Could they shop for you before arrival? Which I think is more popular if you're in a long term accommodation. Another thing is to check the grocery options.
And that was one of my favorite things to do when we were in Europe the last couple of times was to go to the Aldi store or the Little and just walk the aisles and just see how it differed. And also something similar to how we would shop for groceries and to also watch how the locals were buying their groceries. So the local supermarkets are a good place to go.
There are usually health food stores around and there may be specialty shops like gluten free bakeries or vegan cafes. And there were also in the cities, there were enough markets on the street displaying fresh produce and fruits and baked goods and such. And so you could certainly explore, investigate and ask questions.
And a lot of it, it's good to plan ahead with that. And that's something else that we use AI to help with, you know, what's close. And if you need something special, you could even do that research, find a place that has what you need and find a hotel that's close to whatever supermarket or health food store works for you.
And then you really need to have a backup plan just in case. Again, we mentioned this before, keep some emergency food available. Find two to three restaurants near your hotel that, you know, have the options that you need, say you're vegan or vegetarian or gluten free.
Check out the menus in advance and then again, see where they are and have a good map to get to your new favorite grocery store. So we can review and we can put this all together into a simple travel outline for our pre-trip planning. Remember to identify your dietary needs.
Research the local cuisine. Check for kitchen access in your accommodations. Enlist your must-have foods and pack them.
Prepare your medical documents. And have what you may need for the first 24 hours and have that in your little food kit. And that's especially important if you have some kind of flight delay or there's a strike or something else happens.
Remember that's part of the layering strategy for packing. Have some shelf-stable staples. And if possible, think about your perishable items.
And if you're in a place that will have a kitchen, find those and put them in the fridge or freezer right away. We mentioned the mini kitchen kit too. And don't forget your allergy medical kit.
And again, I'm going to put all of these notes in the show notes so you can have a list. When you do your destination research, look at apps and tools, translation cards, grocery stores, restaurants that can accommodate your diet, and accommodation support. They may be able to help you.
And for your daily travel strategy, carry snacks, communicate clearly, wipe surfaces, pace your meals, and keep backups. Thanks for joining us today and hope this helps a little with planning for your diet while you are traveling. See you next week.
(Transcribed by TurboScribe.
Show Notes
Music
Links to Referenced Resources
Specialized Food Apps and Pre-trip Planning Tips
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
19 min
September 08 Change Theories for Better Travel
Our travel improves when we understand change theories.
Ouch! A later-in-life bodily issue forced us to look at some change theories. No way would we give up travel, but no way could we travel in the same way that we used to. Searching the web showed us a few change theories that seemed strange at first. However, we started using such change theories in our daily lives.
Of the several change theories that we learned about, one of our favorites is the Spoon Theory. We use that personally quite often. Considering that we had never heard of it until recently, we have added it to the top of our list of change theories.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Speaker2:
Imagine waking up, walking into your kitchen, and opening the silverware drawer, only to realize that the handful of random spoons sitting inside are literally the only currency you have to survive the rest of the day.
Speaker1:
Right. Yeah, it's a completely different reality.
Speaker2:
Exactly. Every single thing you do, you know, showering, making coffee, answering a quick email, it can cost you one of those spoons. And when they're gone, I mean, you are just done.
So if you're prepping for a meeting, or maybe you're just incredibly curious about how humans adapt, this deep dive is for you. We're looking at a stack of transcripts today from a project called Living the Could Life.
Speaker1:
Yeah, and it's this massive, really fascinating synthesis of discussions. It serves as this incredible overview of how people actually rebuild their lives after major physical or energetic shifts.
Speaker2:
It's just so relevant for anyone dealing with, well, having a human body.
Speaker1:
Totally. We're decoding the behavioral psychology, the neurobiology, and, you know, the really gritty logistical realities of living with chronic illnesses, disabilities, or even just natural age-related changes.
Speaker2:
Because aging comes for all of us.
Speaker1:
Exactly. It's basically a masterclass in how to construct a life that feels positive, realistic, and highly intentional, without all the info overload.
Speaker2:
And by the end of this deep dive, you will seriously never look at a drawer full of silverware, or the word should, the same way ever again.
Speaker1:
Oh, absolutely not. The sources make this bold claim right out of the gate, which is that before we can even talk about changing our physical habits, you know, our daily routines or energy management adaptation has to start with our vocabulary.
Speaker2:
Yeah, the language we use to process our reality, it basically dictates what we can physically do.
Speaker1:
It does. And it starts specifically with the words we use in our own heads. The sources lean really heavily on Dr. Shad Helmstetter's research on self-talk.
Speaker2:
Right. The brain as a literal processor.
Speaker1:
Exactly. He points out something foundational to neurobiology. The brain is a literal processor.
It literally does not distinguish between a casual wish and a direct command. It just follows the strongest programming you feed it.
Speaker2:
It's basically an obedient machine. Like, it doesn't have a sense of irony or nuance when it comes to your internal dialogue.
Speaker1:
Precisely. And that brings us to the immense biological danger of the word should. Helmstetter classifies should as level two self-talk.
Speaker2:
Level two, okay.
Speaker1:
Yeah. It's a level of recognition, but it's deeply tied to disbelief, pressure, and guilt. When you tell yourself, like, I should get more exercise, but I'm tired, your brain hears that should and instantly triggers a subtle threat response.
Speaker2:
Because should feels like, um, like a nagging external boss standing over your shoulder with a clipboard.
Speaker1:
Yes. That's exactly it.
Speaker2:
It just makes you feel inadequate, which immediately makes you want to rebel and, I don't know, sit on the couch instead.
Speaker1:
And that external pressure creates a measurable physiological reaction. Should activates the amygdala, which is, you know, the brain as fear center. It induces mild stress and guilt.
Speaker2:
Wow. Just from one word.
Speaker1:
Just from that one word. And when the brain feels threatened or pressured, it goes into a defensive posture. It justifies why you aren't doing the thing.
It actually inhibits the prefrontal cortex.
Speaker2:
Which is the part responsible for problem solving.
Speaker1:
Yeah. Exactly. Problem solving and forward action.
It literally shuts that down.
Speaker2:
Which is why the sources heavily contrast should with the word could. They classify could as level three self-talk. Right.
Level three. So if should is the demanding boss, could is more like an internal explorer handing you a map. It moves the brain away from obligation and toward choice.
But I mean, let me quiz back a little here. Is it really as simple as swapping one single word? Does the brain actually rewire just because you said could instead of should?
Speaker1:
It sounds too easy. Right. But the underlying mechanism is actually profound.
Could lowers that threat response we just talked about. It shifts the brain into a state of possibility, curiosity, and most importantly, safety.
Speaker2:
And a safe brain is ready to learn.
Speaker1:
Exactly. A brain that feels safe is primed for neuroplasticity. The ability to form new neural connections.
But we have to be incredibly careful here because the sources identify two very different types of could.
Speaker2:
Wait. The grief could versus the agency could.
Speaker1:
Yes. The grief could operates entirely in the past tense. It is saying something like, I could run faster 10 years ago, or I could navigate this airport without help before I got sick.
Speaker2:
It anchors you in loss.
Speaker1:
Completely. You are programming your literal processor with a continuous loop of mourning, which reinforces a state of helplessness.
Speaker2:
So the antidote to that is the agency could.
Speaker1:
Exactly. The agency could operates strictly in the present or future tense. I could take a 10 minute walk today or, you know, I could try a modified seated version of this task.
Speaker2:
That activates self-efficacy. It tells your brain that you have capability right now in the exact body you currently have, not the one you used to have.
Speaker1:
Right. And there's also this concept mentioned in the sources called the pink elephant rule.
Speaker2:
Oh, I love this one. The visual cortex struggles with the word not.
Speaker1:
Yes. If you tell yourself, uh, I shouldn't be nervous about this doctor's appointment, your brain skips right over the shouldn't and zeros in on the word nervous. It visualizes the anxiety.
Speaker2:
It's like telling someone, whatever you do, do not think of a pink elephant.
Speaker1:
And boom, there's the pink elephant. Your visual cortex conjures the exact image you supply. But if you shift that to an agency could and say, I could be calm, you feed the brain a positive target to move toward.
Speaker2:
It's one thing to change your vocabulary to. I could though. I mean, that positive self-talk kind of falls apart if you're constantly haunted by the exact precise memories of what your healthy body used to be able to do.
Speaker1:
Yeah. That's a huge roadblock for a lot of people.
Speaker2:
Right. So to actually adapt, we have to look at how the brain fundamentally alters the way it stores memories as we age or as we go through these major life shifts.
Speaker1:
Which takes us into this fascinating concept called fuzzy trace theory or FTT.
Speaker2:
FTT. Yeah.
Speaker1:
It's a dual process model of memory that explains how we actually extract meaning from our lives. So we store two types of memories for any event. First, we have verbatim traces.
Speaker2:
Which are the exact objective details.
Speaker1:
Right. The precise facts of what happens. Second, we have just traces.
These represent the bottom line, meaning the emotional truth or like the core lesson of the event.
Speaker2:
And the research here shows something that completely upends how we normally view cognitive aging. As we get older, our brains naturally move away from retaining those sharp verbatim details and lean way more heavily into just reasoning.
Speaker1:
Which the sources emphasize is not necessarily cognitive decline, it is an upgrade to wisdom.
Speaker2:
Okay, wait. I have to push back a bit on that. Isn't losing exact details genuinely a bad thing?
It sounds a little bit like we're just trying to put a cheerful, positive spin on memory loss to make people feel better about it.
Speaker1:
I totally get that. And it is a completely valid fear. Losing those sharp details is genuinely a form of grief.
And we really shouldn't minimize the frustration of, you know, forgetting a specific name or a date.
Speaker2:
It's scary.
Speaker1:
It is. But from a purely neurological survival standpoint, the brain is trading that verbatim data for something far more useful. Accumulating verbatim details takes up immense metabolic energy.
Speaker2:
Oh, so it's a resources thing.
Speaker1:
Exactly. As we gain experience, the brain filters out the noise to extract the core lesson. People change their behavior when the meaning of an event shifts, not when they memorize a list of facts.
Gist is what actually drives human decision making.
Speaker2:
The sources give a really clear medical example of this. So imagine a doctor tells a patient they have exactly a 22.2% risk of a surgical complication.
Speaker1:
Right, so that 22.2% is the verbatim trace.
Speaker2:
But no human being makes a life-altering medical decision based on visualizing the number 22.2. They extract the gist of that data, like, that risk feels too high, I need to protect my body, or that risk is negligible, let's do the surgery.
Speaker1:
We act on the gist always. And when we apply this to body disruptions, letting go of the verbatim details of your old healthy body is the only way to accept the gist of what you can still do.
Speaker2:
Like the example with Parkinson's in the text. The verbatim detail is the physical tremor. It's the mechanical difficulty of the movement.
But the gist is their deep intention to move, to connect, to be part of the room. Or for someone experiencing memory loss, the verbatim is forgetting the specific details of a past vacation. But the gist is the enduring joy and the emotional bond they share with the person sitting right next to them.
Speaker1:
I love that. You stop worrying about the verbatim shoulds of your physical limitations and you start living in the gist-coulds of your human spirit.
Speaker2:
It's a beautiful foundation. But, I mean, eventually you have to execute these intentions in the real physical world. And what happens when your body simply hits a wall?
A positive gist mindset cannot manufacture cellular energy out of thin air.
Speaker1:
No, it definitely can't. And that brings us to the cold, hard economics of chronic illness.
Speaker2:
Which brings us right back to that silverware drawer we started with. The origin story of spoon theory is just famous in the chronic illness community.
Speaker1:
Oh yeah, it's legendary.
Speaker2:
It started in a diner in 2003. A woman named Christine Miserandino was trying to explain to her healthy friend what it physically cost to live with lupus. Words just weren't working.
So she grabbed 12 spoons from the tables around them, handed them to her friend and said, this is your energy for the day.
Speaker1:
Right, those spoons represented her daily biological budget. And the profound realization of spoon theory is that healthy people wake up with an abundant, almost limitless reserve of energy.
Speaker2:
They don't even calculate the cost of existing.
Speaker1:
Exactly. But for someone with a systemic body disruption, every single action has a tangible, non-refundable cost.
Speaker2:
The breakdown in the sources is staggering when you actually look at the mechanics. If you are healthy, waking up and taking a shower costs zero spoons. You don't even think about it.
Speaker1:
No, not at all.
Speaker2:
But if you have lupus, waking up with severe joint inflammation costs two spoons before your feet even hit the floor. And if you have ME-CFS, which is myalgic encephalomyelitis or chronic fatigue syndrome, waking up unrefreshed might cost four spoons.
Speaker1:
And then taking a hot shower could cost three more because the heat causes blood to pool in your lower extremities, which leads to this intense dizziness.
Speaker2:
So by the time the commute to work is over, the healthy person might have spent, what, zero to three spoons?
Speaker1:
Yeah, at most. While the person with lupus has spent seven and the person with ME-CFS has spent 18 spoons before they even reach lunchtime.
Speaker2:
That's incredible. They're operating in severe biological debt before the day has really even begun.
Speaker1:
And we aren't just talking about a person being tired. That's a huge misconception. We are talking about literal cellular failure.
With ME-CFS, the mitochondria in the cells are failing to convert ATP, the molecular currency of cellular energy, into usable fuel.
Speaker2:
Wow. The sources also mention POTS, right? Postural Orthostatic Tachycardia Syndrome.
Speaker1:
Yes, POTS is a perfect example. This is where your autonomic nervous system misfires so badly that just standing up to brush your teeth causes your heart rate to spike to 150 beats per minute.
Speaker2:
So your body is running a marathon while you are literally just standing at the bathroom sink. Exactly. So having a chronic illness is basically like living on a prepaid debit card with a randomized wildly fluctuating balance every single morning while everyone else around you is walking around with a limitless credit card.
Speaker1:
That is a perfect analogy. And to manage that randomized debit card, you have to use a clinical tool called activity aggregation scoring.
Speaker2:
Activity aggregation scoring. It sounds complicated.
Speaker1:
It just means evaluating the true comprehensive spoon price of a task. It's not just the physical cost of like walking or lifting. You have to calculate the cognitive cost of focusing on a screen, the sensory cost of navigating bright fluorescent lights, and you know, the emotional cost of interacting with people.
Speaker2:
That is just an exhausting amount of mental math just to exist.
Speaker1:
It really is, which is why occupational therapists rely on the four P's to help people survive this economy.
Speaker2:
Okay, the four P's. Pacing, planning, prioritizing, and positioning.
Speaker1:
Right, and positioning is a prime example of changing the physical mechanics of a task to save a spoon. It can be as simple as just sitting on a tall stool while you chop vegetables at the counter.
Speaker2:
Because by sitting, your heart doesn't have to work as hard against gravity to pump blood.
Speaker1:
Exactly. Which preserves your energy for something more meaningful later in the day.
Speaker2:
It's the same with managing the cognitive load of a disability. Like if someone experiences vision loss, their brain is suddenly working twice as hard neurologically just to keep them balanced and to navigate a familiar room.
Speaker1:
Every little thing costs extra.
Speaker2:
Right. But, you know, when your daily spoon count is consistently that low, despite all the pacing and planning, you eventually have no choice but to rely on external support. I mean, running out of spoons just means you need help.
Speaker1:
Yes, and bringing someone into your fragile energy economy requires extreme care. The dynamic between a care receiver and a caregiver is incredibly delicate.
Speaker2:
It can fall apart so easily if the fit is wrong.
Speaker1:
Totally. The sources outline some major red flags that indicate this partnership is going to fail.
Speaker2:
Like what?
Speaker1:
Well, for caregivers, red flags include operating with a savior complex, or becoming easily frustrated when tasks take longer than expected, or routinely ignoring the care receiver's stated spoon limits.
Speaker2:
Oh, that's a big one.
Speaker1:
Yeah, or frankly, just lacking the physical strength to safely help with heavy transfers from a bed to a chair.
Speaker2:
But there are red flags for the care receivers to watch for in their own behavior, too, right?
Speaker1:
Oh, absolutely. Things like expecting your caregiver to be available 247 without their own rest, or stubbornly refusing to use adaptive tools like a shower chair that would make the caregiver's job significantly easier.
Speaker2:
Or operating with the expectation that the caregiver can just magically read your mind.
Speaker1:
Exactly. Which is where spoon theory comes back in as this vital, neutral language to bridge the gap, saying, I am out of spoons removes the moral weight from the situation.
Speaker2:
It establishes a hard biological boundary, rather than sounding like a personal failure or some passive-aggressive excuse to get out of an activity. Right, it depersonalizes it. But practically speaking, how do you actually avoid the silent resentment that inevitably seems to build up when one person relies so heavily on another for their basic daily needs?
Speaker1:
It's tough, but the sources emphasize proactive, structured communication. Before committing to a long-term caregiving dynamic, you do a trial run.
Speaker2:
Like a weekend stress test.
Speaker1:
Exactly. Treat a weekend as a stress test to evaluate the physical and emotional compatibility. Use clear I-statements.
But the most effective protocol they suggest is explicitly checking both people's spoon levels before discussing anything logistical or emotional.
Speaker2:
Oh, that makes so much sense. If the caregiver has zero spoons left after a long shift, and the receiver has zero spoons because of a symptom flare, trying to discuss finances or scheduling is guaranteed to end in a massive argument.
Speaker1:
Guaranteed. You have to acknowledge the biological debt first, and delay the conversation until the bank accounts are replenished.
Speaker2:
So taking all of this out of theory and turning it into a real, sustainable life obviously requires a blueprint. We have the new language of could, the just reasoning for memory, the spoon counting, the caregiving boundaries. The sources provide a framework for integrating all this called a 70-day change plan.
Speaker1:
Yes, and they suggest using travel as the ultimate stress test for this new lifestyle.
Speaker2:
Travel is definitely a stress test, but why 70 days?
Speaker1:
The timeline of 70 days is rooted in hard neurological data. Dr. Filippolali's behavioral research demonstrates that it takes an average of 66 days for a new complex behavior to become automatic.
Speaker2:
Okay, so roughly two months.
Speaker1:
Right. And furthermore, a recent 2025 study from McGill University showed that 10 weeks, which is 70 days of consistent cognitive practice, actually rejuvenates the brain's cholinergic system in older adults.
Speaker2:
Wait, how does that actually work mechanically? I mean, does the thinking positive thoughts just magically heal the brain?
Speaker1:
Not magically, mechanically. The cholinergic system is the neural network responsible for flexibility, learning, and readiness to change. The plan revolves around a daily noticing practice.
Speaker2:
It's not just forcing toxic positivity.
Speaker1:
No, not at all. You ask yourself five simple questions every day, such as, what did I notice in my body today? What felt easier by just 1%?
What surprised me?
Speaker2:
Okay, small things.
Speaker1:
Exactly. By forcing your brain to scan for novel positive stimuli, you are giving that cholinergic system a daily workout. This practice literally thickens the neural pathways associated with adaptation.
You stimulate acetylcholine production. Wow. Yeah, and over 70 days, this repetition moves you from level three self-talk, I could, into level four self-talk, which is identity-driven.
I am.
Speaker2:
Oh, I see. So you evolve from saying, I can be patient with my fatigue, to, I am someone who honors my body's current pace.
Speaker1:
Precisely. And when you apply this recalibrated identity to travel, you realize you need a highly practical approach, because travel is a chaotic environment practically designed to steal your spoons.
Speaker2:
It really is. So the sources recommend something called the buffer protocol. The first rule is physiological.
Never book a 5 a.m. flight. Never. Because waking up at 2 a.m. completely disrupts your circadian rhythm, it spikes your cortisol levels, and it bankrupts your baseline energy before you even reach the airport doors.
Speaker1:
You're starting in the negative. And the second rule is logistical. Swallow your pride and use TSA Cares or the airport wheelchairs.
Speaker2:
I mean, the psychological resistance to accepting a wheelchair at an airport is massive. For a lot of people, it feels like giving up or publicly signaling a loss of independence.
Speaker1:
And that right there is the verbatim memory of a healthy body haunting the present reality. But the occupational therapy math is undeniable. Walking 500 yards on a hard airport concourse while pulling a heavy bag costs 4 spoons.
Riding in a wheelchair costs zero.
Speaker2:
So it's not giving up. It is a highly strategic move to protect your investment in the trip.
Speaker1:
Exactly. You save those 4 spoons so you actually have the cellular energy to enjoy a meal when you land at your destination.
Speaker2:
You shift travel from being a gamble with your health into a controlled environment where you manage your spoons rather than letting the environment steal them.
Speaker1:
Which is also the logic behind the one major event rule.
Speaker2:
Right. A healthy tourist itinerary is, like, a museum at 9am, a walking tour at noon, and a dinner show at night.
Speaker1:
Which is a spoon nightmare. A spoon-managed itinerary allows for just one anchor event per day. You do the midday museum, perhaps using a rented mobility scooter, followed by a mandatory horizontal rest period in a dark, climate-controlled hotel room.
Speaker2:
Just to drop your heart rate and let your autonomic nervous system reset.
Speaker1:
Exactly. You are intentionally building environmental redundancies. You're designing a vacation.
And really, by extension, a life around the concrete reality of your biology, rather than the memory of your past capabilities.
Speaker2:
Adaptation really is a quiet, continuous recalibration, isn't it?
Speaker1:
It really is. It requires shifting from the pressure of should to the possibility of could. It requires focusing on the core meaning of your experiences, the gist, rather than mourning the exact verbatim details of the past.
Speaker2:
Than respecting your biological bank account. Which brings up this massive, thought-provoking shift in perspective regarding how we view human vitality as a whole. We are so conditioned by modern society to view health as the absolute absence of illness.
Speaker1:
Right, like if you're not perfectly able-bodied, you aren't healthy.
Speaker2:
Exactly. We think of vitality as the total absence of physical limitation. But what if the way modern society measures health entirely misses the point?
Speaker1:
Oh, I love this question. What if true vitality is actually the mastery of your specific energy economy? What if your current physical limitations are not a wall blocking your path, but they are the exact architectural blueprint you need to design your most intentional, authentic life?
Speaker2:
When you have a limitless credit card of energy, it is incredibly easy to waste your days on things that lack actual meaning. But when you only have 12 spoons, you become fiercely, beautifully intentional about where every single one goes.
Speaker1:
That limitation forces profound clarity.
Speaker2:
It really does. So tomorrow morning, when you open that drawer to grab a spoon for your coffee, take a second to look at that silverware a little differently. Notice where you are choosing to spend your biological currency today.
Catch yourself using the word should, and see what happens when you replace it with could. Thank you for joining us on this deep dive, respect your baseline, and we will catch you next time.
(Transcribed by TurboScribe. Go Unlimited to remove this message.)
<
Show Notes
Music
Links to Referenced Resources
Victory Cruise Lines
The Boat Company
Spoon Spending Chart
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
23 min
September 01 Cruising the Midwest. Really? Alaska?
It's a joke that you can cruise the Midwest. Or is it not?
It's definitely not a joke that cruising the Midwest is a real thing. In this episode you will not only hear about cruising the Midwest, but also cruising in Alaska. Two entirely different experiences. But, they have so much in common. Both explore parts of the world that some might miss. Both are welcoming to guests with disabilities. Take a listen. to learn about cruising the Midwest. Then, continue to hear about a special Alaska cruise company trying to save the wonderful Tongass National Forest.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Theresa:
Robert:
Theresa:
Hey, this is Theresa, and we are so thrilled that we've already reached 20 episodes. That's a huge milestone for us. Most people quit, but we keep trudging on and hope you are enjoying our content.
Last week we did half of a podcast done by our friends at Google Notebook. We just plugged in a bunch of our earlier podcasts regarding travel and asked them to put something together. So we did that first, and this week we're doing the second part.
We are getting to the exciting part about cruising in the Midwest. Now who's ever thought about that? Well, having lived on Great Lakes many of my years, I think it's spectacular.
So take a listen.
Speaker 2:
We aren't going to the predictable Caribbean islands or the crowded ports of the Mediterranean. No.
Speaker 1:
Instead, the sources take this floating base camp somewhere completely unexpected. The American Midwest. We are diving into the Great Lakes.
Speaker 2:
The inland seas of North America.
Speaker 1:
I have to admit, I completely geeked out over the geography here. When you say lake, people usually picture a calm, glassy pond where you take a rowboat out to fish. The Great Lakes are not ponds.
They contain roughly 20% of the entire world's fresh surface water. To put the scale into perspective, Lake Superior alone is the size of the country of Austria.
Speaker 2:
It's massive.
Speaker 1:
Lake Michigan is larger than Croatia.
Speaker 2:
They are massive, dynamic, violently powerful bodies of water that generate their own distinct weather systems and possess a deeply ingrained, somewhat tragic maritime culture.
Speaker 1:
Right. If you look at the history, Great Lakes cruising is actually not a new, modern invention. Back in the late 1800s and early 1900s, massive coal-fired steamships operated as floating palaces, carrying wealthy travelers and immigrants between industrial hubs like Chicago, Detroit, and various Canadian ports.
It was a thriving industry. But then the interstate highway system was built, commercial air travel took off, and the Great Lakes passenger industry essentially died overnight.
Speaker 2:
But what the sources explore is the modern renaissance of this industry. However, it hasn't returned in the form of massive 4,000 passenger floating cities. It has returned in the form of small, intimate expedition ships.
The specific vessel detailed in the sources is called the Victory First. We're talking about a capacity of maybe 200 to 400 passengers maximum.
Speaker 1:
So absolutely no towering water slides, no rock climbing walls, no massive casinos, and no hairy chess contests by the pool.
Speaker 2:
Exactly. It is a quiet, deeply destination-focused, highly educational experience. And that smaller scale is vital for accessibility.
On a megaship, just walking from your cabin at the front of the ship to the dining room at the back can be a half-mile journey. On a ship like the Victory Third, the footprint is condensed. Everything is manageable.
Speaker 1:
The sources outline the entire experience, and it starts with the logistics of boarding. They departed from Toronto, Canada. They stayed pre-cruise at the Westin Harbor Castle, which they noted had a wonderfully accessible entrance, allowing a seamless transition from the hotel directly to the port.
Speaker 2:
Right.
Speaker 1:
And when it came time to actually board the Victory I, the crew employed a technique that is central to the philosophy of adaptive travel.
Speaker 2:
Yes. With an estimated 25 to 30 percent of the passengers on these types of expedition cruises using some form of mobility aid, whether that is a cane, a walker, or a wheelchair, the crew cannot just point to a steep metal ramp and say, good luck. They employ what they call the sailor's handshake.
Speaker 1:
Detail what that actually looks like mechanically, because it is a very specific type of assistance.
Speaker 2:
It is not a passive offer of a hand to hold. A standard handhold is unstable. If the guest slips, both people's grips can easily break.
The sailor's handshake is a firm, highly calibrated forearm-to-forearm grip.
Speaker 1:
Like a Roman handshake.
Speaker 2:
Exactly. The crew member anchors their stance, locks forearms with the guest, and physically bridges the gap between the solid dock and the moving gangway. It's a transfer of stability.
It is a level of human care that goes far beyond structural ADA compliance. They are using their own bodies to act as the infrastructure.
Speaker 1:
Inside the ship, that thoughtful accessibility continues. They describe the coastal dining room, which is completely step-free, ensuring mobility devices can glide right up the tables. But they also highlight a really unique culinary feature on board.
An interactive restaurant simply called the grill.
Speaker 2:
Which sounds like a phenomenal sensory experience, provided you are prepared for it.
Speaker 1:
Oh, it sounded so incredibly cool. You go up to the grill, and instead of just ordering off the menu and waiting for a plate, the staff brings you a specialized volcanic stone that has been heated in an oven to 400 degrees Fahrenheit. You literally cook your own cuts of premium meat or fresh fish right at your own table on this scorching rock.
It's highly interactive. It's communal. You control exactly how your food is prepared, and it is all included in the fare.
Speaker 2:
However, the sources are meticulous in their auditing, and they do note a significant architectural caveat regarding the grill.
Speaker 1:
Right. To get to the sundeck space just above the grill, guests are required to navigate a set of pretty steep maritime-style stairs. There's no elevator access to that specific upper vantage point.
Speaker 2:
Which serves as a very realistic reminder that no ship, regardless of how modern or well-designed, is 100% perfect for every single body. But what makes the Great Lakes Expedition so compelling are the ports of call. Because you aren't dealing with the ancient, protected, and often untouchable cobblestone grids of medieval Europe, many of these Midwestern American and Canadian cities have newly revitalized, heavily paved, highly accessible industrial waterfronts.
Speaker 1:
Let's track the actual route they sailed. They start near the iconic Niagara Falls, but they dock in a port called Port Colborne. Now, instead of just taking a standard bus to look at the water from a safe distance, the excursion they chose took them to a decommissioned hydroelectric power plant.
Speaker 2:
This sounded amazing.
Speaker 1:
They boarded a massive, fully accessible industrial elevator and plunged 180 feet below the Earth's surface.
Speaker 2:
They entered a half-mile-long, perfectly flat concrete tunnel that was originally carved out of the bedrock to expel water from the turbines.
Speaker 1:
And they rolled all the way down this tunnel, deep underground, and it empties out onto a viewing platform literally right at the explosive base of the falls. You feel the vibration of the water in your chest. It is a brilliant example of repurposing heavy industrial infrastructure to create a deeply accessible, thrilling tourism experience.
Speaker 2:
From there, the Victory Eye crossed Lake Erie and traveled down to Cleveland, Ohio, specifically to visit the Rock and Roll Hall of Fame. But the sources do not just list the exhibits. They analyze this stop through a very specific, critical sensory lens.
Speaker 1:
Right. If you're a music fan, it sounds great. But if you have vision impairments or sensory processing issues, the Rock Hall is actually a massive, overwhelming challenge.
The architects intentionally designed the museum to be kept very dark in order to preserve the fragile costumes and paper artifacts. That low lighting immediately creates a barrier for anyone with depth perception or low vision issues.
Speaker 2:
Furthermore, the audio environment is chaotic. There is loud, overlapping music playing from dozens of different video screens and exhibits simultaneously. The sound waves are bouncing off the hard glass and steel architecture.
Speaker 1:
If your brain struggles to filter out competing audio tracks, this environment is essentially a sensory minefield. It goes back to that radio and strobe light analogy. It highlights exactly why pre-planning and reading these types of detailed audits are so crucial.
Just because a famous building has a wheelchair ramp at the front door does not mean the interior environment is functionally accessible for your specific body disruption.
Speaker 2:
Moving onward, the shift sails to Detroit, Michigan. The standard assumption for Detroit tourism is to take automotive factory tours. Instead, the sources highlight a visit to the Detroit Institute of Art to view the massive, breathtaking Diego Rivera murals.
It is a powerful reminder that these gritty, industrial, midwestern cities are actually hiding world-class, highly accessible cultural hubs.
Speaker 1:
Then they sail all the way up into Lake Huron and Lake Michigan, reaching Escanaba, located in Michigan's remote upper peninsula. And this stop was absolutely fascinating. Instead of doing a standard walking tour of the town, they booked a premium excursion to a Michigan State University forestry research facility located deep in the woods.
Speaker 2:
And this is where the educational aspect of expedition cruising truly shines. They didn't just look at trees, they engaged with cutting-edge environmental science.
Speaker 1:
They learned about the biochemical differences in maple trees. We all know sugar maple syrup, which is what you put on pancakes, but the researchers were studying red maple syrup, and they discovered that red maple syrup on a molecular level does not support microbial life.
Speaker 2:
Really?
Speaker 1:
Yeah. Bacteria cannot grow in it. Because of this, it doesn't require rigorous pasteurization, and the medical community is actively researching its unique properties as a potential hydration and nutrient delivery system for cancer patients who are undergoing severe chemotherapy and cannot tolerate traditional liquids.
Speaker 2:
That is wild. It's those precise, unexpected moments of profound discovery that make this type of travel so rewarding. You aren't just buying a cheap plastic magnet in a souvenir shop, you're interacting with scientists who are actively trying to solve complex medical disruptions.
Speaker 1:
And finally, the ship hits Mackinac Island. This is an island entirely frozen in time. Absolutely no motorized cars are allowed on the island, only bicycles and horse-drawn carriages.
The sources carefully note the logistics here. While the island does have some specifically adapted carriages that can accommodate a wheelchair trying to board the standard, high-stepping horse carriages can be physically daunting, if not impossible, for someone with limited mobility.
Speaker 2:
That makes sense.
Speaker 1:
But if you can manage the logistics, you can visit the incredibly historic Grand Hotel, which boasts the longest contiguous porch in the entire world.
Speaker 2:
So the Great Lakes offer a highly curated, very manageable, surprisingly accessible adventure. But this brings us to a critical junction in our deep dive. What happens when a traveler with a body disruption decides they want to leave the paved waterfronts, the gentle ramps, and the predictable logistics entirely behind?
What if they possess an intense desire to explore a raw environment that actively resists human infrastructure?
Speaker 1:
To answer that, the sources take us out of the Midwest and transport us to the extreme edge of the continent, the Tongass National Forest in Alaska.
Speaker 2:
The sheer raw scale of the Tongass is almost unfathomable to the human mind. We're talking about 16 million acres of wilderness. Geographically, it's a splintered, shattered archipelago consisting of over a thousand individual islands violently carved by ancient glaciers into deep saltwater fjords.
And crucially, it is a temperate rainforest. It is not an environment designed for human comfort.
Speaker 1:
Okay, here's where it gets really interesting. The travel organization they chose to navigate this wilderness with is simply called The Boat Company. And the origin story of this specific ecotourism nonprofit is, without a doubt, one of the most bizarre, deeply ironic pieces of environmental history I have ever heard in my life.
Speaker 2:
It is a phenomenal collision of corporate monopoly, industrial extraction, and radical environmental preservation. The story traces all the way back to the A&P grocery empire. For decades in the mid-20th century, A&P was the undisputed monopolistic king of American retail.
They controlled the supply chains.
Speaker 1:
And the heir to this massive grocery fortune, a young man named Mike McIntosh, decides to go up to Alaska in the 1950s. He takes a job working the slum line at the Waterfall Cannery. No, this cannery was not a quaint local business.
It existed for one brutal, highly efficient reason, to extract, process, and can millions of pounds of Alaskan salmon to supply every single A&P store across America.
Speaker 2:
Right. Massive extraction.
Speaker 1:
It was mass, unchecked industrial extraction on a staggering scale. But while Mike is up there, elbow deep in fish guts and breathing in diesel fumes from the fishing fleet, something unexpected happens. He completely falls in love with the pristine, fragile ecosystem of the Alaskan wilderness.
Speaker 2:
So fast forward a few decades to the 1970s. The patriarchs have passed and the immense family inheritance is being distributed. Instead of doing what most heirs do, buying fleets of luxury yachts or investing in massive real estate developments, Mike McIntosh pivots.
He takes his massive portion of the grocery fortune and creates a philanthropic foundation entirely focused on environmental protection.
Speaker 1:
But he is incredibly pragmatic. He doesn't just sit in a plush corner office in Washington, D.C. writing checks to charities. He realizes that there are brilliant environmental lawyers fighting tooth and nail in the capital to save a forest they have never physically seen.
They're arguing over topographic maps in windowless conference rooms.
Speaker 2:
Yeah, totally disconnected from the reality.
Speaker 1:
Right. So Mike decides he needs to bring the heavyweights, the aggressive lawyers from the Natural Resources Defense Council, the lobbyists from the Sierra Club all the way up to the Tongass to physically show them the towering ancient cedars and the whales they're fighting for.
Speaker 2:
He understood that to fuel their legal stamina, he needed them to feel the scale and the overwhelming fragility of the landscape firsthand. But to navigate a splintered archipelago of a thousand islands, he needed a boat. And this is where we encounter the ultimate historical irony of the story.
The specific vessel Mike McIntosh purchased in 1980 to launch this aggressive conservation effort was a ship called the Observer.
Speaker 1:
And do you know who owned the Observer before Mike bought it?
Speaker 2:
I do. And it's crazy.
Speaker 1:
Standard Oil. It was quite literally a heavy duty vessel used by fossil fuel executives to cruise the Alaskan coast and survey areas for mass industrial drilling operations. And Mike buys it, strips it and repurposes it to save the very forest it was designed to exploit.
It is such a pragmatic, ruthless approach to conservation. He weaponized the heavy infrastructure of industry to fight that exact same industry.
Speaker 2:
Exactly. And that ethos of pragmatic adaptation survives today. The boat company currently operates two small, rugged vessels, one being the Mist Cove, carrying only about 20 to 24 guests at a time.
And they operate on a philosophy that Captain Jim, the master of the vessel, proudly refers to as the anti-itinerary.
Speaker 1:
I love this concept. Trying to fight the weather in the Tongass National Forest is like trying to fight gravity. You will lose every single time.
The captain explicitly states on day one that there is no set schedule. The entire trip, every secluded cove they anchor in, every muddy hike they attempt to take, is dictated entirely by the immediate unpredictable whims of the wind, the tidal shifts and the migration patterns of the wildlife.
Speaker 2:
It requires a total psychological reset of the modern guests' expectations. In normal life, you force the environment to bend to your outlook calendar and your dinner reservations. In the Tongass, if a 50 knot wind suddenly picks up, you pivot.
And above all else, you have to accept the rain.
Speaker 1:
Oh yeah, the rain.
Speaker 2:
The Tongass receives upwards of 200 inches of rain annually. It's not just bad weather. The rain is the literal biological engine of the entire ecosystem.
You put on your heavy rubber boots, you zip up your Gore-Tex and you actively engage with the wet.
Speaker 1:
But here is the massive logistical problem. Getting into that wet, rugged, violently unpredictable environment presents a monumental hurdle for physical accessibility. And this is where the sources highlight a critical, unavoidable conflict in maritime law.
Speaker 2:
We are talking about SOLUS regulations, the International Convention for the Safety of Life at Sea.
Speaker 1:
Right. To prevent a ship from catastrophic rapid flooding in the event that the hull is breached by a rock or a rogue wave, SOLUS requires the installation of high watertight steel bulkheads. You find these at the bottom of exterior doorways and sectioning off interior hallways.
The logic is brutal, but necessary. You literally sacrifice a flooded hallway to save the buoyancy of the entire ship.
Speaker 2:
Makes sense for safety, sure.
Speaker 1:
But these bulkheads create a 6 inch to 12 inch solid steel lip in the doorways, which means that true ADA wheelchair compliance, a smooth flat roll through, is physically and legally impossible on these small, rugged vessels.
Speaker 2:
The architecture of the ship inherently, legally fails the disabled traveler. The steel cannot be removed. So if the structure cannot adapt, how does the boat company adapt?
The sources highlight the philosophy of the current operator, Hunter McIntosh. Instead of relying on concrete ramps and automated elevators, they rely on a rigorous hiring process to find, quote, good human beings.
Speaker 1:
Now, when I first read that, it sounded like generic corporate fluff, like, ah, we hire good people. But when you look at the mechanics of the trip, it is actually a profound, highly functional practice of radical hospitality. Because they legally cannot cut down the steel doors, they compensate for the architectural failure with immense human empathy and physical assistance.
We see this manifested perfectly when they load the skiffs.
Speaker 2:
The skiffs are the small, wobbly, motorized outboard boats used to transport guests from the anchored mothership to the muddy shores of the islands. Boarding them while they bob in the ocean swell is precarious for anyone, let alone someone with limited mobility.
Speaker 1:
And this is where the sailor's handshape returns, but on a much more intense level. When guests are trying to time the swell and step down into those wobbly skiffs, the crew never, ever rushes them. They do not look at their watches.
They offer that firm, unhurried forearm-to-forearm grip. They use their own core strength to absorb the kinetic energy of waves, safely bridging the terrifying gap between the steelship and the small boat.
Speaker 2:
They are actively replacing missing structural infrastructure with highly trained human infrastructure. And the emotional anchor of this entire Alaskan section of the source material is a story that perfectly encapsulates this ecos. It is a story about a guest with low vision attempting to hike a trail known as Moss Gully on the remote Brothers Islands.
Speaker 1:
This specific story really got me. So you have a guest who has significant vision impairments. She wants to experience the forest, so she joins a guided hike.
But as they get deeper into the Tongass, the terrain becomes incredibly hostile. There are massive hidden tree roots slick with rain. The moss is deep and spongy.
And beneath the dense canopy of the ancient cedars, the lighting becomes incredibly flat, destroying any sense of depth perception.
Speaker 2:
It just becomes too dangerous for her to navigate.
Speaker 1:
Exactly. She physically cannot continue the hike without risking a severe fall. Now think about how this scenario plays out in a standard corporate group tour.
Speaker 2:
In a standard tour, this is exactly where the friction and the anxiety peak. The tour guide starts stressing about staying on schedule to get back to the bus. The rest of the group gets impatient.
The guest with the vision impairment feels an overwhelming sense of shame and feels like a burden. The entire atmosphere becomes tense and miserable.
Speaker 1:
Exactly. But remember the core philosophy, the anti-itinerary. There is no bus to catch.
There is no schedule. There is no rush.
Speaker 2:
So how does the guide react?
Speaker 1:
A young guide named Andrew assesses the situation. He simply tells the rest of the able-bodied group to hike on ahead with another guide. He does not pressure the low vision guest to push through the pain.
He doesn't awkwardly try to drag her over the slick roots to conquer the trail. He simply sits down next to her on a damp mossy log in the middle of the trail. And they just sit there for hours.
They talk about life. They listen to the rain hitting the canopy, and they are completely surrounded by the staggering magnitude of the ancient forest. He allowed her to experience the profound depth of the wilderness entirely on her own terms, at her own pace.
Speaker 2:
It is a stunning, deeply moving example of human empathy bridging the exact gap where the physical infrastructure and the natural terrain entirely fail. He didn't view her limitation as a problem to be solved. He viewed it as a parameter to adapt to.
But this raises a fascinating pivot. If human empathy and unhurried pacing are the keys to accessing the raw wilderness, how do we apply that exact same pacing to dense, ancient, human-built environments?
Speaker 1:
So what does this all mean for the modern city? To find out, we take our final deep dive into a 750-year-old experiment in extreme urban survival, Amsterdam.
Speaker 2:
Amsterdam is arguably the world's greatest master class in adapting human civilization to a hostile geography. You look at the beautiful canals and the tall, elegant brick houses, and it looks incredibly stable. But the reality is that the entire city is quite literally built on top of a swampy, unstable peat bog.
Speaker 1:
Wait, the whole city is on a swamp?
Speaker 2:
Oh yeah. To create solid ground where none existed, the early Dutch engineers had to drive hundreds of thousands of massive wooden pilings, entire tree trunks, deep through the soft peat, until they hit the solid, compressed sand layer far below the surface.
Speaker 1:
So the entire magnificent city is propped up on submerged wooden stilts.
Speaker 2:
Precisely. But here is the terrifying engineering catch that still dictates life in Amsterdam today. Those wooden pilings only retain their structural integrity if they remain completely submerged in an oxygen-free underwater environment.
If the groundwater levels drop even slightly and oxygen hits that ancient wood, microbial rot begins almost immediately.
Speaker 1:
The foundations begin to literally disintegrate, which is exactly why when you walk through Amsterdam, you see those famous leaning houses that look like they're about to topple into the canals. Their wooden foundations have rotted and shifted.
Speaker 2:
So geography really is destiny here. Managing the complex system of canals and water levels isn't just about keeping your shoes dry during a rainstorm. It is a life or death civic duty to keep your neighbor's house from collapsing into the swamp.
And because your neighbor's water management directly affects the structural integrity of your own home, it forced the creation of a society based on deep, highly organized, inescapable cooperation.
Speaker 1:
That makes total sense.
Speaker 2:
The Dutch term for it is the polder model. You have to work together, you have to compromise, or everyone collectively sinks.
Speaker 1:
That underlying culture of intense cooperation is visible everywhere. But it also creates a highly calibrated, incredibly fast-moving urban environment that can be deeply intimidating for a traveler with a mobility issue. Amsterdam is a living, breathing, open-air museum.
Speaker 2:
But a museum where you're actively, constantly trying not to get run over.
Speaker 1:
Yes. I mean, I have to warn you, and the sources make this abundantly clear. The bicycle traffic in Amsterdam is not a quaint leisure activity.
It is a highly aggressive, deeply efficient mode of mass transit. The locals have spent decades negotiating the physical flow of this traffic. There are dedicated red-paved bike lanes everywhere.
Speaker 2:
And the cardinal rule for pedestrians, which disabled and able-bodied tourists alike often fail to grasp, is to respect the flow.
Speaker 1:
Yes. If you, as a tourist, step off the sidewalk and into that red bike lane, and you stop to look at a Google map on your phone, you are throwing a massive wrench into a perfectly tuned high-speed machine. You are a boulder in a fast-moving river.
Speaker 2:
Listen for the bells.
Speaker 1:
Exactly. The locals won't necessarily yell at you, but they will aggressively ring their bicycle bells. If you hear the bells, do not freeze.
Jump back onto the pedestrian sidewalk immediately. Do not disrupt the negotiated flow of the city.
Speaker 2:
But despite the chaotic speed of the bicycles and the inherent architectural challenges of navigating a 750-year-old street grid, Amsterdam is remarkably, intentionally accessible. The flat geography of the bog certainly helps, but they have intentionally designed their public transit network, operated by a company called GVB, with modern accessibility firmly in mind.
Speaker 1:
The newer blue-and-white electric trams that snake through the city feature low-floor entries and designated spacious wheelchair parking spaces. The city buses are equipped with fold-out ramps that the drivers are trained to deploy quickly. The underground metro system features functional elevators at every single station.
And the massive ferries that transport thousands of people daily across the Eye River to the northern neighborhoods are completely free, flat, and fully accessible to power chairs.
Speaker 2:
However, a traveler must remain realistic. The cobblestones are a constant brooding reality in the historic center. They are rough, deeply uneven, and present a significant trip hazard for anyone using a cane, and they cause massive vibration fatigue for anyone in a wheelchair.
Speaker 1:
And then there are the historic canal houses themselves. Because land was taxed based on the width of the canal frontage, the houses were built incredibly narrow and incredibly tall. This means the stairs leading up to the front doors and the stairs leading down into the basement levels are terrifyingly steep.
They create immediate, unsolvable architectural barriers.
Speaker 2:
The sources contrast the museum experiences beautifully. Massive state-funded institutions like the Wrights Museum and the Van Gogh Museum have been heavily renovated to be highly accessible, with smooth floors and massive glass elevators. But the Anne Frank House, which is located inside one of those historic narrow canal houses, is fundamentally inaccessible to wheelchair users due to its incredibly steep, narrow, historic wooden stairs.
Speaker 1:
Right, they just can't change it.
Speaker 2:
Exactly. The museum cannot alter the architecture without destroying the historical integrity of the hiding place. They do, however, offer an immersive virtual reality tour on the ground floor for those who cannot climb.
Speaker 1:
Which brings us to a specific day trip the sources highly recommend, and it serves as the perfect culmination of everything we've discussed today. Taking a slow, scenic train and bus ride out of the city center to visit Muiderslot Castle.
Speaker 2:
Muterslot is a fascinating, brutal piece of medieval history. It's a heavy, square, brick fortress, originally built in the 13th century by a ruler named Count Florus V. And it's important to understand that it was not built to be a pretty decorative royal residence.
It was a machine designed to extract wealth.
Speaker 1:
Right, it sat strategically at the mouth of the Vecht River. Count Florus and his soldiers would string a massive, incredibly heavy iron chain entirely across the river, physically blocking wealthy merchant ships from sailing through until they paid a heavy toll.
Speaker 2:
It was a literal medieval toll booth enforced by armed guards. But Count Florus V made a lot of powerful enemies with that aggressive taxation, was eventually kidnapped by his own nobles, and was brutally murdered. The original castle was destroyed in the ensuing chaos.
It was rebuilt about 70 years later on the exact same foundations, which is the imposing, moated version tourists visit today.
Speaker 1:
But navigating an authentic, defensive medieval fortress with a body disruption requires a healthy, pragmatic dose of realism.
Speaker 2:
Exactly. When you arrive at Muiderslot, you encounter a dichotomy of accessibility. The exterior grounds, the massive courtyard, the meticulously maintained historical plum orchard, the herb gardens, and the wide paths circling the scenic defensive moat are all flat, well-maintained, and fully accessible.
In recognition of this partial accessibility, wheelchair users actually receive free entering to the grounds.
Speaker 1:
You can roll right over the drawbridge, but the interior of the castle is an entirely different story.
Speaker 2:
Right. To get up into the defensive towers, the armory, and the historical living quarters, you have to climb spiral stone stairs that are intensely steep, incredibly narrow, and absolutely architecturally necessary for a medieval fortress. There is no hidden elevator shaft carved into the 13th century brick.
Speaker 1:
And this is where the overarching, profound lesson of the entire Living the Could Life series truly crystallizes into a single moment. You do not have to conquer the stairs to enjoy the castle.
Speaker 2:
Say that again, because it is the thesis of adaptive travel.
Speaker 1:
You do not have to conquer the stairs. One of the hosts of the source material, who was navigating a body disruption, arrived at the castle and explicitly chose not to force herself to climb those brutal spiral stairs. She didn't push her body into a pain flare-up just to check a tourist box.
Speaker 2:
Instead, she adapted.
Speaker 1:
Yes. She sat in the highly accessible courtyard cafe, bathed in the sunlight. She ordered a hot chocolate.
She interacted with a beautiful, highly detailed, tactile bronze model of the castle that was specifically designed for visually impaired visitors to feel the architecture. She watched the other tourists, she looked at the moat, and she simply absorbed the atmosphere of a 700-year-old fortress.
Speaker 2:
And crucially, she didn't feel lesser than for not going inside the tower.
Speaker 1:
Exactly. She didn't view the stairs as a personal defeat. She traveled at a pace that fundamentally honored the reality of her body on that specific day.
Speaker 2:
That is the pure essence of adaptive travel. It's about aggressively removing the external societal pressure of the perfect itinerary and finding deep, authentic joy in the specific environment you can comfortably and safely access.
Speaker 1:
Okay, let's take a deep breath and recap this incredible, expansive journey we've been on today. We started by completely dismantling the ADA myth, realizing that true functional accessibility in a hotel room requires rigid numbers, nouns, and the psychological comfort of predictability, rather than just a legal checkbox on an architect's blueprint.
Speaker 2:
We discovered how the brilliant structural engineering of modern cruise ships creates a frictionless, zero-trip environment, offering vital energy autonomy and life-saving ICU-level safety nets for travelers navigating complex chronic conditions.
Speaker 1:
We sailed the massive inland seas of the Great Lakes on the intimate Victory I, utilizing the physical empathy of the sailor's handshake to explore subterranean power plant tunnels, analyze the sensory minefield of the Rock and Roll Hall of Fame, and discover the cancer-fighting biochemistry of red maple syrup in a remote forestry lab.
Speaker 2:
We ventured into the wild, deeply unpredictable reign of the Alaskan Tongass with the boat company, witnessing how radical human empathy and unhurried patience can perfectly compensate for the rigid world, and how specific, thoughtful travel companies use human empathy to bridge the dangerous gaps in physical infrastructure.
Yeah. But what if we dared to scale that concept up to a societal level? Imagine if we designed all of our modern cities, our public transit systems, our educational institutions, and our workplaces with that exact same sailor's handshake mentality we found on the wobbly skiffs in the Alaskan wilderness.
What would our society look like if instead of just relying on cold legal checklists and pouring concrete for minimum-grade ramps, we actively cultivated human patience, flexibility, and empathetic infrastructure as the absolute baseline of our daily interactions?
[Speaker 3]
Imagine a world where the guide sitting quietly on the mossy log isn't a rare, beautiful exception to the rule, but the absolute unquestioned standard of how we treat each other. Thank you so much for joining us on this deep dive. Keep learning, stay intensely curious, and always remember to travel the world entirely on your own terms.
Show Notes
Music
Links to Referenced Resources
Victory Cruise Lines
The Boat Company
Spoon Spending Chart
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
33 min
August 25 How to Travel Easily with a Disability
Reprieve
Traveling with a disability, and feeling age proud, are core foundations of Living the Could Life. We packaged an overview of some episodes using Google Notebook. We run out of spoons, too!
The first part of this broadcast jumps around a bit. However, it is entertaining and full of helpful information.
Take a listen to learn more about Traveling with a Disability, staying age proud, and taking advantage of traveling tips.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
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(Transcribed by TurboScribe. Go Unlimited to remove this message.)
[Speaker 3]
Welcome back to Living the Good Life. Today we're doing something a little bit different. We are proud to announce that we recently finished our 20th episode of Living the Good Life, so we are going to do a bit of a review of all the episodes.
Our friends at Google Notebook compiled a bit of a talk based on our previous audio that we sent to them. We're going to do it in two parts. There will be a part about travel, and we were talking about several different kinds of travel, and so as not to make it too long, there'll be a part one and part two.
[Speaker 2]
Imagine you've just spent like 12 absolutely exhausting hours traveling. I mean, you've navigated the chaotic airport terminals, you've squeezed into this shockingly narrow airplane seat, you've somehow wrangled your luggage into a taxi, and finally, finally, you arrive at your destination.
[Speaker 1]
Right, you're just running on fumes at that point.
[Speaker 2]
Exactly. So you approach the front desk of your hotel, you confirm your reservation for a fully accessible room, you grab your key card, and you ride the elevator up. You swipe the card, push open the door, and the bed in front of you is 30 inches off the ground.
[Speaker 3]
Oh, wow. Yeah.
[Speaker 2]
And for a wheelchair user, that 30-inch mattress might as well be glued to the ceiling. So today, we're really tearing down this pervasive myth of the ADA checklist, and we're completely redefining what travel actually looks like for real bodies.
[Speaker 1]
It's such a phenomenal topic, to be honest, because it forces us to really re-examine the built environment that we interact with every single day. I mean, most people just assume that if a space is legally compliant, it's functionally usable.
[Speaker 2]
Right, which makes total sense on the surface.
[Speaker 1]
Right. But what we're going to explore today is how architectural compliance routinely, and I mean routinely, fails human reality. And more importantly, we're looking at how travelers and certain segments of the travel industry are radically adapting to those failures.
[Speaker 2]
Yeah. Okay, let's unpack this, because the mission of today's deep dive is to go through this incredibly rich, just eye-opening stack of material from the Living the Good Life series.
[Speaker 1]
It's a fantastic series.
[Speaker 2]
It really is. The sources we have in front of us are this massive collection of highly detailed travel logs, hotel accessibility audits, remote expedition reviews. I mean, we are going to be tracking journeys that stretch from the ancient bicycle-choked cobblestones of Amsterdam all the way to the rugged Alaskan wilderness, and even into the massive inland seas of the American Great Lakes.
[Speaker 1]
Yeah, it's a huge geographical spread.
[Speaker 2]
Totally. But we aren't just looking at tourist hotspots here. We're looking at how people explore the world when they are navigating what our sources refer to as body disruptions, which, by the way, I think is just a brilliant umbrella term.
[Speaker 1]
It really is. It covers physical disabilities, chronic illnesses, mobility limitations, neurodivergence. It's very inclusive.
[Speaker 2]
Exactly. We're looking at how people travel at a pace that honors their actual bodies, rather than just constantly fighting against them.
[Speaker 1]
What's fascinating here is that this material operates as so much more than just a set of travel itineraries. It's really this profound exploration of geography, of human empathy, and the hidden mechanical layers of accessibility that most travelers never even realize exist. It challenges the very baseline of what makes a physical space welcoming.
Because, as you pointed out with that hotel room example right at the start, a space can legally invite you in while simultaneously putting up physical barricades to your actual comfort.
[Speaker 2]
Right. Before we can embark on these grand sweeping adventures to the Alaskan wilderness or whatever, we have to look at the absolute baseline of travel, because the foundation of any trip anywhere on Earth is a hotel room.
[Speaker 1]
100%.
[Speaker 2]
If you cannot rest safely, if you can't use the bathroom safely, if you just cannot recharge your physical and mental batteries, the destination outside that room honestly doesn't matter. The museum could be spectacular, but if your launch pad is compromised, you never get off the ground.
[Speaker 1]
That's a really crucial framing. The hotel room is the foundational infrastructure of travel. And our sources reveal this massive, just pervasive blind spot in the modern travel industry, which is the deeply ingrained idea that ADA, the Americans with Disabilities Act, that ADA compliance is synonymous with comfort or even true functional accessibility.
[Speaker 2]
And they're not the same thing.
[Speaker 1]
Not even close.
[Speaker 2]
This totally blew my mind as I was reading through the audits, because I think, like a lot of people, I just assumed ADA regulations were this comprehensive safety net, like they had it all figured out.
[Speaker 1]
Yeah, that's the common assumption.
[Speaker 2]
But the sources make it crystal clear that ADA compliance is merely the legal minimum. It is a rigid architectural checklist. It's a set of measurements.
It is absolutely not a guarantee that a specific room will actually work for a unique human being navigating a specific body disruption.
[Speaker 1]
Right. And if we connect this to the bigger picture, the ADA requires structural modifications, right? Like widened doorways to accommodate the width of a standard wheelchair or the installation of grab bars near toilets, visual alarm systems for the hearing impaired.
And those are vital.
[Speaker 2]
Oh, absolutely vital.
[Speaker 1]
They're legally mandated baselines, but the law doesn't aggressively regulate the nuanced functional details of living. Like it dictates the width of the door, but it doesn't necessarily dictate the specific layout of the furniture once you actually get through that door.
[Speaker 2]
And that is exactly where the concept of compliance falls completely apart in the real world. Let's go back to that 30 inch bed example. You know, you might look at a high bed and think, oh, that feels luxurious, like sleeping on a cloud or whatever.
[Speaker 1]
Sure.
[Speaker 2]
But break down the actual physical mechanics for us. Why is a 30 inch bed in an ADA room such a catastrophic failure in design?
[Speaker 1]
It really just comes down to basic biomechanics and physics. So a standard manual or power wheelchair seat typically sits about, let's say, 19 to 20 inches off the ground.
[Speaker 2]
OK.
[Speaker 1]
If an individual with limited or zero lower body mobility needs to get out of that chair and into bed, they have to perform a lateral transfer. They're relying entirely on upper body strength, leverage and momentum to slide from the chair to the mattress. Now, if the bed is relatively level with the chair, say 20 to 22 inches high, that transfer is a horizontal movement.
It's manageable. But if the bed is 30 inches high, you're suddenly demanding that this person perform an uphill pivot transfer.
[Speaker 2]
So they're having to lift their entire body weight, essentially dead weight, like 10 or 11 vertical inches using nothing but shoulder leverage.
[Speaker 1]
Precisely. Biomechanically, it's an impossible ask for a lot of people. The bed becomes a literal wall.
The room is legally compliant because the door was wide enough to let the chair in. But the user is fundamentally trapped in their chair because they can't get into the bed. Wow.
Yeah. So the hotel checked the legal box, but they completely failed the human being.
[Speaker 2]
And the sources outline a whole catalog of these hidden hazards. Like they talk about the roll-in shower that has a surprise three inch lip at the entrance to keep the water in.
[Speaker 1]
Oh, that's a classic one.
[Speaker 2]
Right. And to a walking guest, a three inch lip is basically invisible. You just step right over it without thinking.
But think about the front casters on a wheelchair. Those really small wheels at the front. A three inch lip stops them dead.
[Speaker 1]
It acts like a parking block.
[Speaker 2]
Exactly. A three inch lip is not a roll-in shower. It's a barricade that requires you to pop a wheelie over wet tile, which is incredibly dangerous.
[Speaker 1]
Or consider the equipment that's actually provided. The sources detail this all too common scenario of the wobbly, unstable plastic shower chair that a hotel just sort of tosses into the back of a closet.
[Speaker 2]
Oh, yeah. The flimsy ones.
[Speaker 1]
Yeah. It isn't anchored to the wall. It isn't medically rated.
It's just a cheap plastic stool sitting on slippery, soapy tile. I mean, that isn't accessibility. That's just a massive liability waiting to happen.
[Speaker 2]
My personal favorite, and by favorite, I mean, the one that made me want to pull my hair out was the thermostat.
[Speaker 1]
Oh, right.
[Speaker 2]
The sources described this fully certified, supposedly wheelchair accessible room where the thermostat to control the air conditioning was placed six feet up the wall. Which is just, it's absurd. It is.
If you're sitting in a chair, you literally cannot reach it. You are trapped in a room where you have zero autonomy over your own environment. Or the people on the door, also drilled in at six feet high, you hear a knock and you have absolutely no way of verifying who is standing on the other side of your door.
[Speaker 1]
It just highlights a profound disconnect between the architects who are drafting the blueprints and the actual end users experiencing the space. I mean, the architect drew a box that said door, but they didn't think about the sight lines of the person opening it. And this unpredictability, this constant friction of arriving at a hotel and wondering which crucial element is going to be wildly misconfigured is exactly why the sources pivot to a really surprising defense of mid-scale chain hotels.
Specifically, they highlight brands like the Holiday Inn Express.
[Speaker 2]
See, I really have to push back on this a bit because I have always viewed those massive standardized chains as just painfully bland.
[Speaker 1]
A lot of people do.
[Speaker 2]
Right. Because if you're traveling to, say, a vibrant historic city, isn't staying in a copy-pasted room across 2000 identical locations, just sacrificing the magic of travel. You're trading the cultural immersion of a cool local boutique hotel for a beige box that looks exactly the same whether you're in Ohio or Florida.
You're trading wonder for boredom.
[Speaker 1]
From the perspective of a traveler without a body disruption, your critique is entirely valid. It is a sacrifice of local flavor. But this raises a really important question that the sources bring up.
What is the psychological and physical cost of a surprise?
[Speaker 2]
The cost of a surprise.
[Speaker 1]
Yes. Because for a traveler navigating chronic fatigue or a visual impairment or neurodivergence, a charming boutique hotel often translates directly into a maze of exhausting, unpredictable variables.
[Speaker 2]
Okay. I see where you're going with this.
[Speaker 1]
Yeah. Unpredictability drains energy. Predictability, on the other hand, is accessibility.
When a traveler with these specific needs walks into a standardized chain hotel, the layout is a known quantity. They instantly know that the bathroom door slides to the left. They know the bed is uniformly 22 inches high.
And they know the light switch is exactly where their hand expects it to be on the wall.
[Speaker 2]
So they don't have to solve the spatial puzzle of a new room.
[Speaker 1]
Exactly. Every single ounce of mental bandwidth and physical energy you save by not having to hunt for an outlet or rearrange furniture to make your chair fit or figure out some bizarrely designed modern shower. That is energy you can bank and spend on actually enjoying the vacation the next day.
[Speaker 2]
That makes so much sense. It's all about cognitive load. If you're already burning massive amounts of energy just navigating an airport or a new city in a body that requires constant management, the last thing you want is for your bedroom to be an escape room puzzle.
You need it to be a frictionless environment.
[Speaker 1]
And the sources share this brilliant historical anecdote about Ray Charles that perfectly illustrates this exact dynamic.
[Speaker 2]
Yes. I loved this detail. Because Ray Charles, one of the most famous musicians in the world, could have afforded to stay in literally any luxury penthouse on the planet.
But he famously favored staying at holiday inns, particularly back when they were one of the very first chains to aggressively enforce identical standardized room layouts across all their properties.
[Speaker 1]
Because for a traveler with total blindness, that standardization was the ultimate luxury. He could walk into a holiday in Seattle or a holiday in Miami, and his mental map of the room was instantly flawlessly accurate.
[Speaker 2]
Right. He wasn't stressing about tripping over a randomly placed modernist coffee table.
[Speaker 1]
Exactly. Or feeling along unfamiliar walls just to find the bathroom door. The architecture was predictable, which meant his autonomy was guaranteed.
[Speaker 2]
It really reframes the idea of what luxury actually is. Luxury isn't always high thread count sheets. Sometimes luxury is simply the absence of friction.
But the sources are also very pragmatic here. Even at a chain hotel, how do you guarantee you're actually getting that predictable, accessible room? They point out some serious red flag language to watch out for during the booking process.
[Speaker 1]
They absolutely stress that travelers cannot rely on vague adjectives. The primary advice is to demand nouns and numbers.
[Speaker 2]
Right. If you call a front desk to confirm your reservation, and you ask if the room is accessible, and the clerk says, oh yeah, it's pretty accessible, or it should be fine for a wheelchair, the sources say you need to hang up and run.
[Speaker 1]
Pretty accessible is hospitality speak for. The front door is wide, but good luck getting your chair close enough to the bathroom sink to actually wash your hands. A traveler with a body disruption cannot survive on pretty accessible.
They need quantitative, verifiable data to ensure their safety.
[Speaker 2]
So you don't ask, is the bed okay? You have to ask, can you take a tape measure and tell me exactly how many inches high the top of the mattress is from the floor? You literally have to force the hotel to quantify their compliance.
[Speaker 1]
But even with rigorous pre-trip verification, the travel industry is chaotic, right? Rooms get double booked, pipes burst, miscommunications happen. So what do you do when you show up at midnight, exhausted, and the hotel has given your specifically required accessible room away?
Or they try to put you in a room with a massive step up to the bathroom.
[Speaker 2]
This was a piece of advocacy in the sources that I think everyone, disabled or not, needs to know. They outline a specific legal protocol known in the industry as the ADA walk.
[Speaker 1]
It is a critical tool of self-advocacy. If a hotel cannot provide the specific disability accommodating room that you booked, confirmed, and paid for, they can't just shrug their shoulders and say, sorry, we're full.
[Speaker 2]
Right, they can't just kick you to the curb.
[Speaker 1]
No, it is their legal and financial responsibility to rebook you at a comparable nearby hotel that does have an accessible room available. And they must cover the cost of your transportation to get there.
[Speaker 2]
You really have to know your rights. You're not being a difficult guest or a Karen for demanding the basic foundational requirement of your stay. You are simply holding the corporation to a binding legal contract.
[Speaker 1]
And we really cannot discuss the foundation of accessible travel without addressing a massive, often completely invisible demographic that the sources shine a very bright light on. The caregivers.
[Speaker 2]
Yes, the spouses, the adult children, the partners, the dedicated nurses. Caregivers are fundamentally the human infrastructure that makes travel possible for countless people with severe body disruptions. Yet, as the sources point out, the travel industry almost never designed spaces with the caregiver in mind.
They're basically an afterthought, if they're thought of at all.
[Speaker 1]
Think about the physical toll of caregiving in a space not designed for it. The sources highlight the critical need for lower beds, not just for the traveler transferring from a wheelchair, but for the caregiver. If a bed is too high or too low, a caregiver who has to physically assist with turning or lifting a partner is risking severe lumbar back strain.
If the caregiver blows out their back on day two of a 14 day trip, the vacation is over. It becomes a medical emergency for both of them.
[Speaker 2]
And it isn't just the physical strain, right? It's the psychological space. If you're traveling as a caregiver, you are essentially on the clock 24 hours a day.
[Speaker 1]
Absolutely.
[Speaker 2]
The sources emphasize the need for rooms that offer separate sleeping spaces or even just a heavy curtain or a partial architectural divider. Caregivers need a basic sense of privacy to decompress, to read a book with a light on, to simply have a moment where they aren't visually monitoring their partner.
[Speaker 1]
Furthermore, they require logistical proximity. An accessible room should ideally be located close to the elevator banks. Why?
Because it's often the caregiver who is making multiple trips to haul heavy medical equipment or making quick runs to get ice for medications or pushing a manual chair.
[Speaker 2]
Right. If you stick the accessible room at the very end of a quarter mile long carpeted hallway, you are taxing the caregiver's physical endurance before they even get to the lobby.
[Speaker 1]
Exactly.
[Speaker 2]
So if we conclude that land-based architecture, no matter how many ADA laws we pass or how rigorously we measure the beds, will always have these unpredictable friction points from narrow doorways to exhausted caregivers, what's the solution? How do we bypass the friction of the land entirely?
[Speaker 1]
The answer the sources provide is fundamentally a geographical workaround. If the land is hostile, you bypass the land. You take the hotel with you.
[Speaker 2]
Which brings us to the second major revelation of this deep dive, the floating resort, cruising as the ultimate adaptive travel hack.
[Speaker 1]
It represents a total paradigm shift in how we approach accessible travel.
[Speaker 2]
Now, I have to be completely honest here. Before reading these sources, I had a massive, deeply ingrained prejudice against the cruise industry.
[Speaker 1]
A lot of people do, yeah.
[Speaker 2]
I always pictured it as the absolute worst aspects of mass tourism. Like thousands of people fighting over buffet shrimp, forced bingo games by the pool, overwhelming noise, and just a general feeling of being trapped in a floating shopping mall. I completely wrote it off as unauthentic travel.
[Speaker 1]
That is a very common perception, especially among travelers who prioritize rugged, independent exploration. But when you look at cruising through the lens of body disruptions, the narrative flips entirely. The sources argue that a modern cruise ship is structurally the most enabling environment on the planet.
[Speaker 2]
And they back it up with some incredibly compelling architectural evidence. The term they use that really stuck with me is the zero trip environment.
[Speaker 1]
It's a great term.
[Speaker 2]
If you're a full-time power chair user, or someone with cerebral palsy, or even just someone who is six weeks out from a knee replacement surgery, terrain is your absolute biggest enemy. On land, you're constantly battling curbs, potholes, tree roots, pushing up sidewalks, steps into restaurants.
[Speaker 1]
But a cruise ship is an engineered bubble of accessibility. There are no curbs on a ship. Ramps aren't these hastily added wooden structures in a back alley.
They are gently graded, seamlessly integrated parts of the deck design. Hallways are wide and perfectly flat. Doors to public spaces are universally automatic.
[Speaker 3]
Wow, yeah.
[Speaker 1]
And crucially, there are massive vertical elevator banks located at the forward, midship, and aft sections of the vessel. You can traverse a city-sized structure for 14 days and completely bypass a single set of stairs.
[Speaker 2]
But I still wrestled with the psychological aspect of it when reading this. Let's say we dock in a beautiful Mediterranean port. Everyone rushes off the ship to go ziplining or take a grueling walking tour of ancient ruins.
But my body is just done. I've hit a wall, my pain levels are spiking, and I physically cannot leave the ship. What about the FOMO?
The fear of missing out? If I have to stay behind, aren't I just trapped in a floating hotel room while everyone else is experiencing the world?
[Speaker 1]
This is exactly where the sources introduce the concept of energy autonomy. And it is a brilliant psychological reframing. Let's compare the land to the sea.
If you're staying at a land-based resort in Cancun and you have a flare-up of chronic fatigue, you have to stay in your room while your family goes down to the beach. You're lying in bed staring at a drywall ceiling. You are entirely removed from the experience of travel.
[Speaker 2]
Right, you feel like a burden and you feel isolated.
[Speaker 1]
But on a cruise ship, your room is the experience. If you need to rest, you don't feel like you're missing the destination because the destination is moving past your window. You can lie in your bed, open the balcony door, feel the sea breeze, and watch the ocean, the fjords of the islands slog by.
You're still actively participating in the journey, but you're doing it entirely on your body's terms, without expending a single calorie of energy.
[Speaker 2]
It's literally a built-in escape hatch that travels with you. Think about the logistics. If you're in a crowded city and you suddenly get overwhelmed, whether it's pain or sensory overload, you have to figure out how to escape.
You have to find a bench, call an Uber, wait on a busy curb, navigate foreign traffic, and finally get back to your hotel. It is an exhausting process just to find relief.
[Speaker 1]
It really is.
[Speaker 2]
On a ship, you can go down to a massive, loud, Broadway-style show in the main theater. You can push your boundaries and participate in the fun. But the moment the lights or the crowd become too much, a dark, quiet, safe room containing your own bed and your own medications is literally a five-minute frictionless elevator ride away.
You never have to negotiate with a foreign transit system to find your sanctuary.
[Speaker 1]
And that concept of sanctuary extends far beyond just having a quiet bedroom. What is truly fascinating here is the unseen medical infrastructure of these modern ships.
[Speaker 2]
This was wild to me.
[Speaker 1]
For travelers navigating severe chronic conditions, or even individuals with terminal illnesses who are looking to take one last meaningful trip with their families, the idea of being hours away from a major hospital is paralyzing. It creates a baseline of anxiety that ruins the trip.
[Speaker 2]
Because if something goes wrong on a walking tour in a small village, you're reliant on a rural clinic that might not speak your language or have your medical history.
[Speaker 1]
Exactly. But modern cruise ships are designed as floating cities, which means they require city-level services. Down on the lower decks, usually hidden from the general passenger areas, these ships have incredibly advanced medical centers.
[Speaker 2]
And we are not talking about a school nurse's office with a first aid kit, some aspirin, and a cot.
[Speaker 1]
Far from it. We are talking about highly sophisticated mini-hospitals. They're equipped with ICU-level stabilization gear, defibrillators, advanced cardiac monitors, full x-ray machines, and pharmacies.
They're staffed by international teams of doctors and nurses who live on board. They even coordinate with specialized third-party medical companies. For example, there is a company called Dialysis at Sea that brings nephrologists and dialysis machines on board specific sailings, allowing patients with end-stage renal disease to receive life-sustaining blood-filtering treatments while they cruise the Caribbean.
[Speaker 2]
That is staggering. The sources even note a detail that is objectively grim. But for some travelers, it represents the ultimate realistic relief.
These massive ships are equipped with on-board morgues. Now, no one wants to think about that on vacation, obviously. But if you're traveling with a terminal diagnosis, the psychological safety of knowing that clinical intervention and dignified handling of the worst-case scenario is literally under your feet cannot be overstated.
It completely down-regulates the nervous system's alarm bells. You can finally relax because the safety net is traveling with you.
[Speaker 1]
That down-regulation is key. And it isn't just about acute medical emergencies. For neurodivergent travelers or individuals prone to severe sensory overload, the cruise industry is actually pioneering some incredibly thoughtful accommodations.
The sources highlight that several major cruise lines are now achieving certifications from organizations like Culture City.
[Speaker 2]
What does that actually look like in practice on a ship? Because ships are notoriously loud.
[Speaker 1]
It looks like intentionally designing environments for differing sensory bandwidths. Let's use an analogy. Imagine trying to tune a delicate radio to catch a faint signal, but someone is shining a massive strobe light in your eyes and blasting an air horn.
Your brain's processing bandwidth is entirely consumed by filtering out the violent noise and light, leaving zero bandwidth for actually hearing the radio or enjoying the environment. That is what a standard casino or dining room feels like during sensory overload.
[Speaker 2]
Wow, that's a great way to put it. So to counter that, the ships are creating designated low-sensory zones. These are quiet lounges where background music is strictly banned, the harsh overhead lighting is significantly dimmed, and the crowds are controlled.
It gives the brain a place to reset. They also offer sensory bags at guest services, which include things like noise-canceling headphones and strobe reduction glasses for people prone to visually triggered migraines or seizures. They're integrating closed captioning on all the screens and braille on the elevator buttons and cabin doors throughout the ship.
[Speaker 1]
They're also providing something profoundly important for certain medical conditions, which is climate control autonomy.
[Speaker 2]
Yes, this is a massive issue for travelers undergoing active cancer therapies or individuals dealing with severe thyroid imbalances or menopause. Their internal body temperatures can wildly, violently fluctuate from freezing to sweating in minutes.
[Speaker 1]
Oh, absolutely.
[Speaker 2]
If you're on a tour bus, you cannot force 40 other people to blast the AC just because you're having a hot flash. But on a ship, you have a digital thermostat in your cabin. You have total, undisputed control over your immediate environment.
You can drop the temperature to 60 degrees if that is what your physiology demands in that moment.
[Speaker 1]
And we must mention the culinary infrastructure. For individuals with severe gastrointestinal disruptions, Crohn's disease, celiac disease, or life-threatening food allergies, traveling often devolves into what the sources call restaurant roulette.
[Speaker 2]
That is the perfect term for it. Trying to explain the absolute severity of a cross-contamination peanut allergy to a busy waiter in a foreign language is a terrifying, exhausting nightmare. You are gambling with your health at every meal.
[Speaker 1]
But on a cruise ship, the dining room operates on a pre-vetted system. When you book the cruise, you register your specific dietary customization with the accessibility department. When you sit down in the main dining room, the maitre d' and your dedicated wait staff already have a digital profile of your needs.
[Speaker 2]
That's so smart.
[Speaker 1]
Your food is prepared in a dedicated allergy-safe galley. It removes an enormous amount of daily friction and anxiety. You can actually enjoy the food instead of interrogating it.
[Speaker 2]
So we have thoroughly established that the cruise ship is the perfect, highly controlled, floating base camp. The architecture works. The medical safety nets are in place.
The food is safe. But a base camp is useless if it doesn't go anywhere. Right.
The destination absolutely matters. And this is where the sources throw us a massive curveball.
[Speaker 1]
We aren't going to the predictable Caribbean islands or the crowded ports of the Mediterranean.
[Speaker 2]
No. Instead, the sources take this floating base camp somewhere completely unexpected.
[Speaker 1]
A quick but important note. The information shared in this podcast is for general educational and entertainment purposes only. We love sharing our insights.
But please remember, this content does not constitute medical, health or professional advice. Every body and every situation is unique. You should always consult with a qualified medical specialist or health care professional before starting any new program, making lifestyle changes, or acting on any information you hear today.
Your health is your responsibility. So let's keep it safe.
(Transcribed by TurboScribe. Go Unlimited to remove this message.)
Show Notes
Music
Links to Referenced Resources
TSA Cares
Spoon Spending Chart
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
27 min
August 18 Finding the Perfect Care Giver
Who Will Care?
Finding the perfect caregiver for those with a new disability is no easy task. There is so much to be considered. Both the caregiver and the receiver have special needs.
In this episode, we offer a few suggestions for finding the perfect caregiver - one who understands the enormity of the job and who can commit to assisting.
The receiver of the assistance also needs to understand what a huge undertaking the caregiver assumes.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Robert:
Welcome back to Living the Could Life, where we explore real-world travel for real bodies, adventures that are meaningful, doable, and full of wonder. Today we're talking about something that doesn't get discussed enough, how to choose the right caregiver or the right care receiver before you commit to the partnership.
Theresa:
Because caregiving is a relationship, and like any relationship, it can thrive or it can fall apart if the fit isn't right.
Robert:
We're going to talk about expectations, boundaries, physical capability, emotional readiness, and what both people should add before saying yes. Theresa, you've seen this firsthand. What happens when the caregiver isn't the right match?
Theresa:
Well, a lot. And sometimes you just have a default caregiver, so you have to make it the right match. Right, Robert?
Well, you have to make it work. Yeah, you've seen it too.
Robert:
Yeah, yeah. And sometimes you really have no choice and you just have to get through it.
Theresa:
Like, as in our case. Not quite. Well, but still, sometimes a caregiver, when you choose one, you have to be careful, just because maybe they're all excited and they have good intentions and they want to help you, but maybe they just don't understand what it takes.
Say that you need to be, have transfers done, or a lot of physically demanding help.
Robert:
They just don't.
Theresa:
Right. They may not have the physical strength to do it. So, sometimes they could also have the wrong attitude, and those are definitely the people you don't want, because they can't be resentful, they have to be patient, and they cannot have a savior complex, because that just doesn't work out.
It actually makes the person who is receiving the care feel not so wonderful.
Robert:
And the care receiver can feel unsafe, guilty, or even like a burden.
Theresa:
Exactly. The partnership ideally has to be balanced, respectful, and realistic, and that doesn't always come immediately.
Robert:
Let's talk about what a person needing care should ask before choosing a caregiver.
Theresa:
First, if you need transfers, mobility support, toileting assistance, those are not small tasks, so the person should be physically able to do what's required. And even if there aren't any of those highly physical tasks, I know if I fall down sometime, or trip, it's helpful to have somebody pick me up.
Robert:
Secondly, do they understand spoon theory? This is the theory of energy management, energy budgeting that we talked about earlier, because if they don't get the idea of energy budgeting, they'll push you past your limit.
Theresa:
Right, we're going to talk a little bit more about spoon theory later in this session, because we found it's something that really works, and it's practical. Third, do they communicate well? You need someone who listens, doesn't take things personally, and doesn't guilt trip you.
Robert:
Or, do they respect eponymy? A caregiver should support independence, not override it.
Theresa:
Exactly. And then finally, do they have the emotional bandwidth? Caregiving requires patience, flexibility, and resilience.
And it's not just the care receiver who should ask, the caregiver also needs to ask some questions.
Robert:
Now, let's look at what should caregivers ask themselves?
Theresa:
First, this matches what the recipient should ask. If you want to be a caregiver, you need to ask, am I physically capable of this? If you can't safely lift, transfer, or support mobility, you shouldn't take the role.
And of course, it depends on the person you are helping with caregiving.
Robert:
Second, do I have the right temperament? Caregiving is not for people to get easily frustrated or overwhelmed.
Theresa:
Third, do I understand the duties required? Things like ADLs, and that's activities of daily living, medication routines, travel, logistics. It's real work.
Robert:
Or, do I have enough spoons myself? Caregivers can burn out fast if they don't manage their own energy.
Theresa:
Right. And finally, can I communicate honestly? You need to be able to say, I need help.
I'm tired, or I can't do this safely.
Robert:
Let's look at travel now. Travel adds a whole new layer.
Theresa:
Oh, that even for people without any kind of disability or body disruption. That's always true. Travel requires physical stamina, patience, problem solving, and the ability to adapt when things go sideways.
Robert:
Care receivers should ask, can this person handle airport stress? Can they manage mobility equipment? Do they stay calm when plans change?
Can they advocate for me if I'm overwhelmed?
Theresa:
And caregivers should ask, can I manage transfers in unfamiliar environments? Can I handle long days with unpredictable spoon costs? Am I comfortable asking for help from airport or hotel staff?
And do I understand accessibility needs well enough to plan ahead?
Robert:
Let's talk about red flags now.
Theresa:
For care receivers, the caregiver gets irritated easily. They minimize your disability. They ignore your spoon limits.
They make you feel guilty. They don't follow instructions or they totally forget their duties or they're physically unable to help you safely.
Robert:
For caregivers, the care receiver expects you to be available 24-7. They don't communicate their needs. They refuse adaptive tools.
They ignore your boundaries. They expect you to just know what they need.
Theresa:
And really, it is like a job. It's like going to an interview. I highly recommend, especially if we're going to travel, do a short day or even if you're not traveling, just spend a day with them at home and see what it's like.
And if you can't do it, you would know from the start. And that works better for both people involved.
Robert:
That sounds like a good idea. It's kind of like we to do our chase downs or we'll be kicking lawns with ISIL students. And we take them out for a weekend or something to see if they could manage it, to see if we could manage them.
You see they have the right equipment. So you could use the same idea.
Theresa:
Right. It is a learning experience and you don't have to necessarily be an expert the first day. I think whether you're on the receiving or the giving end, it's a new skill to learn and things change often.
Robert:
OK, let's talk about Swoon Theory again, but this time from a psychological angle.
Theresa:
Swoon Theory isn't just about physical energy. It's about predictability. People with disabilities often live with unpredictable bodies.
Pain spikes, hot flashes, waves of fatigue, sensory overload. Spoons give structure to something that feels chaotic.
Robert:
And caregivers need to understand at spoon level, our moral judgment. You're not lacing us.
Theresa:
Spoon Theory helps caregivers avoid pushing someone past their limits. And that's the same for the care receiver, too. The caregiver also has a certain number of spoons.
It also helps care receivers communicate without guilt. Saying I'm out of spoons is a boundary. It's not a failure.
Robert:
There's also a psychological safety component. When both people use Swoon Theory, it reduces misunderstanding.
Theresa:
Right. Because instead of arguing about why someone can't do something, you're acknowledging the reality of their energy budget.
Robert:
Let's talk about expectations. What psychological traits matter in a care partnership?
Theresa:
For care receivers, you need someone who listens, someone who doesn't take things personally, someone who doesn't guilt trip you, someone who respects your autonomy, and someone who can regulate their own emotion. And for caregivers, you need a care receiver who communicates clearly, who tells you what they need, who doesn't expect you to read their mind, and who respects your boundaries, too. And I think you need to keep personalities in mind.
Just because somebody needs care or you want to be a caregiver, it doesn't mean that you will get along or that both of you are nice people. It's something to take into consideration. Caregiving is not a place for passive-aggressive behavior, martyrdom, or silent resentment.
Those things will quickly destroy any partnership you have.
Robert:
Let's talk about misunderstandings. They happen. How do you resolve them?
Theresa:
First, if you've thoroughly evaluated each other and have come to acceptable terms, you should be able to assume that you both have good intent. Most conflicts come from miscommunication, not malice.
Robert:
Second, use I-statements. I feel rushed when I need more time to... I'm overwhelmed when...
Theresa:
And third, back to the spoons. Check the spoon levels of both people before discussing anything emotional. If either person is out of spoons, the conversation will go badly.
Or, clarify duties.
Robert:
A lot of conflicts come from mismatched expectations.
Theresa:
And fifth, schedule check-ins. Once a week, sit down and ask, What's working? What's not?
What needs to be adjusted? And what do we need more support with? Care partnerships thrive when communication is proactive and not reactive.
And keep in mind, you may have more than one caregiver. And the same if you are a caregiver. Maybe you care for other people a few days a week or once a month or you just help out.
Let's give our listeners some best practices. For care receivers, be honest about your needs. You can't expect your caregiver to magically know what you need.
And I think that's especially true with people who have invisible disabilities. Don't minimize your disability. And don't push yourself to make the caregiver comfortable.
Although, on the other hand, if you've talked this out, you shouldn't push your caregiver either. Respect your boundaries and their boundaries. And communicate spoon levels early in the day.
Robert:
For caregivers, learn the person's patterns. Ask before helping. Don't assume.
Keep instructions simple and calm. Don't rush. Take breaks.
Advocate when needed, but don't override the timing.
Theresa:
And for both, it's helpful to build routines. Celebrate even small wins. Laugh together.
Take rest without feeling guilty. And remember that you are a team.
Robert:
Your relationships are care partnerships. Succeed when both people choose each other intentionally. Communicate honestly.
And respect each other's limits.
Theresa:
And when misunderstandings happen, as they always do, you resolve them with compassion, clarity, and a shared understanding of spoon limits.
Robert:
Thanks for joining us for our discussion of caregiving. We'll see you next time.
Theresa:
And next time, we will be delving into traveling with a caregiver and go more into hopeful tips for doing that. See you next week.
(Transcribed by TurboScribe. Go Unlimited to remove this message.)
Show Notes
Music
Links to Referenced Resources
TSA Cares
Spoon Spending Chart
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
15 min
August 11 Caretaking for the Newly Disabled
Who Cares?
When disruption affects your body, you may need some times for caretaking for the newly disabled. It's not always the easiest especially if you were independent prior to the bodily change. What does the caretaker need to know? How can they effectively assist you?
What do you need to do to help them assist you? It all depends. We briefly look at some of the situations that you may not have thought of. A sympathetic and trusted caretaker can make your recovery or adaption less stressful.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Robert:
Welcome back to Living the Good Life, where we explore real-world travel for real bodies. Adventures that are meaningful, doable, and full of wonder. I'm Robert.
Theresa:
And I'm Theresa. Today, we're diving into a topic that affects millions of families but often doesn't get nearly enough airtime, and that is caregiving for someone who's recently become disabled.
Robert:
Whether the disability comes from an accident, an illness, or a sudden change in mobility, the early months are intense for the person adapting and for the caregiver learning a whole new world.
Theresa:
So today, we're going to talk about that. I think we're both experts on the subject, at least for my type of disability, which is a hidden one, but we will talk about practical stuff like ADLs, which are activities of daily living, and also the emotional and logistical challenges. And that includes for travel because that's what we are concentrating on.
And yes, we will absolutely talk about spoon theory, which is something we learned about researching for this podcast. First, I think it was personal care. I had to look at everything carefully.
I have been pretty independent, traveled solo a lot of my life, and assume that I could still travel without a caregiver. That pretty much was a disaster. And it's not good when you have flight changes or you can't see well enough to see if your flight has changed or where the gate is.
Fortunately, when that happened, I did have the app, but I just wanted to reconfirm so they didn't have to walk all the way to a gate that might be the correct gate. Because walking through an airport is like walking through an obstacle course. There's too many people.
There's too many distractions. It's hard to see. Because I have an invisible disability, people don't see.
They don't see me from behind. I don't believe one of those times that I was wearing an eye patch because I thought that was only for driving. And I guess that's true because that's true because I was on a group tour and people asked others why it was taking so long to walk on ice or why it was so slow.
And that's because I had to check out everything because I don't have depth perception. I don't have peripheral vision. So then that's when Robert became my caregiver and I'm lucky to have somebody who helps me.
I had to change routines. You know, he reminded me to put my glasses on when I was going out or grab a patch. He also had to understand my ADLs.
Now everything takes me at least twice as long getting dressed, brushing my teeth, using the bathroom, going outside. All of that took extra time.
Robert:
And these are the ADLs Theresa's talking about. Things like bathing, dressing, eating, toileting, transferring and mobility.
Theresa:
And fortunately for me, a lot of those things I can do myself with extra time. I don't cook anymore. I turn on the wrong burner and I'm afraid of burning the house down.
I don't use knives.
Robert:
Yes, you definitely don't use knives.
Theresa:
No, but sometimes I've cheated if I'm really careful. Because when you're not here, but I cut a piece of cheese and that's about it. And I'm very, very careful and it's scary.
But for me, I didn't grow up with this vision loss. And when it happens suddenly, you're not independent anymore. You can't drive anymore.
You can't do anything. You figure out how you want to get help. But on the same hand, for me, because I've been dependent, I feel ashamed of my disability and guilty having to ask people for help because it's so opposite of how I lived before.
And I guess part of that is, do I need equipment? And I did get a cane because I have no depth perception. Stairs are very difficult.
They can look just like a boardwalk and a boardwalk can look like stairs. And then I can get, you know, I'm suddenly frightened in out of it. I have to decide what's safe.
I have to preserve dignity. And even though my disability is mostly invisible, when I wear a patch, people stare, look at me funny. I know one time there was maybe, I'd say, a 12 or 13 year old just staring at me as he walked out into the parking lot from a store, which I don't usually go to anymore.
But he crashed into a light pole. And because I'm mean, I guess I thought, that's what he gets. Like, don't stare at me.
And at least I'm outside.
Robert:
And then there are the rude people who will pass by and say, Arrrrgh.
Theresa:
Oh yeah. I've had, because I wear a patch, but for me, the thing to do is say, hey, matey. And don't let them, I mean, I would never consider saying that to somebody unless it was an actual pirate that I would run.
But yeah, sometimes there's new things I had to get used to.
Robert:
And there's been a huge emotional adjustment for both of us. And that's true for both the caregiver and the person who has that sudden body disruption.
Theresa:
Yeah, definitely is, like I said, I didn't think I needed anyone to take care of me and it makes me feel guilty and dependent, which I just don't like that. Like I said, I'm very lucky because Robert has taken care of me and he's really good. I think if you don't have the disability, sometimes it's hard to understand.
Like even for me, without being able to see, there's things I have to look at everything now and it's exhausting. So Robert tries to model and pretend that he can't see either. So he knows what might be hazardous to me.
And it can be exhausting for a caregiver as well, because it's just a totally different way of living.
Robert:
And that exhaustion can lead us right into spoon theory and energy management. So let's talk about spoon theory. It's one of the most helpful frameworks for understanding energy limits.
Theresa:
And we found out about this while researching topics for this. I had never heard of spoon theory until a month ago, and it really does make sense. We did another podcast totally on spoon theory, so you might want to go back and check that out.
That theory came from Christine Miserandino, who has a disability and she was trying to explain to a friend how much energy it took. So the idea is pretty simple. You imagine you start each day with a limited number of spoons, but everything you do, whether it's big or small, costs you a spoon.
When you run out, you're done. And that doesn't matter on how much you want to keep going. And that's something very difficult, I think, for many, especially if you were active.
I mean, I used to ride my bike and I know it's not a long distance, but I used to ride my bike just as a workout, ride it hard 10 miles a day. Hard for me now would be to pedal once and hope I didn't run into a tree or something so I could still actually pedal a bike. But I can't see where I'm going.
That makes it difficult and that takes up lots of energy. So no sentry rides for me anymore.
Robert:
And that's certainly true for someone who's recently disabled. Their spoons may be drastically fewer than they had before.
Theresa:
And the same thing is true for somebody going through cancer treatments like Robert. And he always thinks he has the energy of a 20 year old anyway.
Robert:
But I feel like I'm 19.
Theresa:
Oh, you're down to 19 now?
Robert:
Yeah, yeah. But I had my radiation treatment and some other therapies. And one of the side effects of all that was extreme fatigue.
And it wasn't just for a few days, it's it can be for months or even years for some people. And I think I'm slowly starting to get out of it now. But I really do wake up in the morning with a limited number of spoons.
And if I push myself too hard during the day and I'm starting to borrow spoons from the next day, I'm going to crash that next day. And it's going to take me a longer time to recover.
Theresa:
And that's true when you think you can keep going because you have to remember you have a limited number of spoons, no matter how many you had in the past and could go on and on and on. You really have to evaluate your personal situation. And you could run out of spoons just by getting up and taking a shower.
And those things, when you change, instead of taking one spoon, as in the past, they could now take three spoons and getting dressed might cost two spoons. I know for me, getting dressed, I used to be one who could be ready for the day in about five minutes. Now I'd say it's 15 or 20.
I have to see if I'm looking at a pair of pants or a shirt. That's something that I could work on. But I haven't gotten to that point, you know, to put shirts over here and the different colors and be better about sorting it out.
And then going to the doctor's, that's not fun, interferes with Robert's schedule. So there's another reason to feel guilty that, you know, I'm cutting in to his day when we're both low on spoons. We make it work out.
Robert:
And you have to be considerate. So instead of saying something like, let's run some errands after your appointment, you should be asking, will you have spoons left for running some errands?
Theresa:
And I usually like stopping and running errands. Sometimes I'm pretty good at doing it. It depends on what the errand is.
I often find myself just sitting in the car while Robert goes into the grocery store. I think it's probably saved us a lot of money because I'm one who likes to look at the clearance rack or look at a different kind of food or think of something different for dinner. It's difficult navigating the store if I do go, which occasionally I do just to do something.
I hold on to the cart. Sometimes Robert will park me somewhere. I have to say, even if I'm parked in a corner, invariably there's somebody coming right at me and it's like, I'm out of the way.
You know, I'm like, give me a dirty look. It's like, but I moved way over. You know, it's like if I pulled off the side of the road, they still want to come and crash into me.
But I think there is some psychological thing about crashing into things or those things attracting you. And then because of my disability, or I actually am not disabled, so maybe I'm one of those fake people, I am impaired, which I can't drive. I have no independence, but until I'm almost totally blind, I am not considered disabled.
But I've been watching a lot of people with disabilities who said, if you think you're disabled, you are. I mean, you know yourself best. And I would I don't know who comes up with requirements, but I would like them to see if they'd still consider this an impairment if they experience the same.
But I guess it's neither here nor there. But that means if we park far away, I have more chances of getting hit by a car I didn't see. That happens whether you can see or not.
Parking lots can be crazy, but I cannot get the little blue tag that you put on your car to park close to the store. Maybe somebody will come up with impairment parking spots and I'd be the only one who had the tag.
Robert:
Let's go deeper into ADLs. What does supporting ADLs look like day to day?
Theresa:
It's a mix of routine and flexibility. For example, maybe bathing or showering requires grab bars, which we have all of them ready to be installed in our house or a handheld showerhead. If you've listened before, you know, we recently built a house during part of that is when I lost all my vision.
So we've made some adjustments. We have a shower with a handheld and a rain shower in it. The bathroom's made to fit a wheelchair if that's ever necessary.
Robert:
All of our doors are now wide enough. They're 36 inch doors.
Theresa:
Right. All of our doors are 36 inch doors. And we just plan that just in case, hoping we never need to use some of the things like a grab bar.
A shower is good for anybody, whether you have a disability or not.
Robert:
And we have the curbless shower, too, so there's no step up.
Theresa:
Right. And we have, you know, those really tall bathtubs look really nice, but I'm a shorter person getting in and out of them is not fun. Oh, so, you know, maybe if you have other disabilities, say you can't use your hands very well, you might need adaptive clothing or magnetic closures, wide leg pants, slip on shoes.
And I think there's a lot more that can be done with things like adaptable clothing.
Robert:
One of the ADLs could be transferring, and that's moving from bed to wheelchair or wheelchair to car. And it often requires a safe, manageable technique.
Theresa:
Right. And you don't automatically learn that. You have to practice and see how the person that you're helping feels and what works best for them.
And caregivers, they learn safe transfer methods, but it's a technique. And I honestly don't know if there's anybody who provides maybe an occupational therapist. I'm not sure.
I'll have to check out to see if they'll come to your house and give you instructions on how to best transfer.
Robert:
And these mobility opportunities help to support autonomy and that independence looks different for everyone.
Theresa:
Right. And independence does look different for everybody. And some people will think, oh, you know, if you're in a wheelchair, you can't walk, but maybe you can.
Maybe you can only walk a certain distance or maybe you need to take rest breaks. You know, you may be able to walk so far without your wheelchair or with a cane or with somebody holding on to you like Robert always holds my hand when we walk. Sometimes I think I might look like a hostage when he grabs my arm, but nobody's called the police yet.
Back to what we're talking about, sometimes brushing your teeth is difficult because of the height of the sink or how far you have to reach to turn on the faucet. Maybe holding the toothbrush is difficult. So there's a lot of things that you have to consider and people want to maximize what they can do.
Robert:
And you want to try and minimize burnout for the caregiver.
Theresa:
Right. Because caregivers have their spoon limits, too.
Robert:
Let's talk about travel logistics. Travel is a huge topic. When someone becomes disabled, travel can feel impossible, but it doesn't have to.
Theresa:
Right. Not at all. It just requires a lot of planning, flexibility, patience and often a sense of humor.
Robert:
Let's break it down. What's the first step?
Theresa:
Well, first step is assessing needs. Do you need mobility aids, medications, bathroom access, rest breaks and your energy level? You know, are you sensitive to sounds or temperature?
You should all write that down before planning. You're actually building a separate travel version of your ADLs.
Robert:
And transportation?
Theresa:
If you're driving, you may already know how to transfer safely. If I know that there's accessible parking and how long you can sit comfortably. If you're flying, you're dealing with TSA, boarding assistants, aisle chairs, accessible seating, pre-boarding.
Be sure when you book your ticket to go to the airline's website and request any special equipment or assistance that you need. Like I always get the wheelchair just for my safety.
Robert:
Hotels are another big one.
Theresa:
Accessible room that can be just that it meets a minimal ADA compliance. Which could be there's a grab bar in the extra high tub or there's one near the toilet. So we talked about some of these before.
Think ahead. About what you need specifically and call the hotel. And I can tell you that a lot of people who work at hotels, they have not been in every room.
And there are some hotels, we'll say like the Grand Hotel, Mackinac Island. We were at the Ritz Carlton in Cleveland. Every room is different.
So if you have a specific style room, just ask if they can check and verify, maybe even send you photos. So some of the other things you can ask, is the shower a roll in or a step in? Does it have a chair?
Are the beds at standard height? Is there enough room to maneuver your wheelchair and store it? Are the doorways wide enough?
Robert:
And then there's pacing.
Theresa:
Travel days require spoon budgeting for sure. Everybody knows that travel is not easy. Although I've heard of people who've traveled millions of times, they've never had a delayed or canceled flight, which amazes me.
It's better to be prepared. So build in some rest time, stay flexible and be happy with the small wins, like finding a great accessible place to eat or navigating a new city without stress.
Robert:
Travel becomes slower, but richer.
Theresa:
Exactly. It's all about presence, not speed. As a formal fear of missing out person, or maybe I still am, but I can't do that anymore, it's been difficult to cut my itinerary in half or take a rest or just say I've run out of spoons and, you know, go get a rest.
Robert:
Now let's talk about the emotional side for both people.
Theresa:
Caregivers often feel guilt, exhaustion or fear of messing up, as do the person being cared for and who can feel grief, frustration or loss of independence. Spoon theory helps, but you still need to remember that communication is everything.
Robert:
And humor.
Theresa:
Yes, sometimes laughing together can be the best medicine. And so celebrating progress, no matter how small, even looking at what you did accomplish.
Robert:
If you're a caregiver for someone who's recently disabled, you're doing one of the hardest and most meaningful jobs in the world.
Theresa:
Exactly. It's so difficult. And if you're adapting to a new disability, your resilience is extraordinary.
Not by choice, but just by if you want to keep living, you have to learn to be resilient and flexible, which is easier said than done. You're learning a new body, a new rhythm and a new way of moving around the world.
Robert:
Ideals, spoon theory, travel logistics, travel logistics, they're tools, they're tools. But the heart of caregiving is partnership.
Theresa:
And a partnership is built one day, one spoon and one victory at a time. I've added a caregiver checklist in the show notes. And next time, we're going to talk about how to choose a caregiver and also how to know if you want to be a caregiver for somebody.
Robert:
Thanks for joining us on Living the Good Life. We'll see you next time. We'll see you next time.
(Transcribed by TurboScribe. Go Unlimited to remove this message.)
Show Notes
Music
Links to Referenced Resources
TSA Cares
Spoon Spending Chart
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
24 min
August 04 Cruising is the Best Vacation for the Disability Community
20 Reasons Why Cruising is a the best vacation for those within the disability community
In this episode we continue our exploration of the advantages of vacationing by cruise ship. Those with disabilities will appreciate the benefits of traveling in a way that reduces stress, and eliminates changing hotels and dealing with learning new surroundings every day.
We share the last of the 20 reasons that show why if you are cruising with body disruptions and disability that this is definitely a choice that you should consider when making your vacation plans.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Theresa:Welcome back to Living the good Life. Today we are going to continue our discussion about why cruising is so wonderful for people with body disruptions. Hope you enjoyed the show.
Robert:
Let's talk about that worst-case scenario. What if it's more than just a flare-up? What if someone actually needs clinical intervention?
That's reason number nine. Onboard advanced medical centers. These are not first aid stations with band-aids and ice packs.
Modern cruise ships have literal mini hospitals on the lower decks. They are staffed by international doctors and nurses, equipped with ICU level stabilization gear, x-ray machines, lab equipment for blood work, and cardiac monitors. If you have a chronic illness, knowing that life-saving medical care is literally under your feet, provides a level of psychological safety you cannot get at a remote beach resort.
Theresa:
Having said that, do be aware that these are not full hospitals, and you should always consult with a doctor before if you have a chronic condition, or especially if you have a terminal condition. There are people who want to do one last hurrah before, I guess, their expiration date comes up, like the next week, and they need to be evacuated from the ship. And I can tell you that does not always make your fellow passengers thrilled.
So please don't put the other 3,000 or 6,000 or 900 passengers in a position they don't want to be in. Just so you know, just in case you do have an accident or something serious happen, because it can happen at any time, there is a morgue on the ship, and they will take care of you. Which, at that point, you probably don't really know.
It does completely lower your nervous system alarm bells to know that you have an option for medical care. And speaking of comfort, let's add reason 10. Climate control autonomy.
Many people undergoing cancer treatments or dealing with thyroid disruptions. Oh, do I get to add that to my list too? Great.
They can experience extreme sudden shifts in body temperature. And I will say that also happens with menopause. So we don't want to not talk about the women who travel and might have that condition.
Oh, in a hotel, the central air can be controlled by a hotel. Cruise ships have individual digital thermostats, and I do want to be honest that sometimes they are set too warm for me. And you can ask to have those adjusted.
If you get a sudden chill or a massive hot flash, you can change your immediate environment in seconds. And I'm one who likes to keep the thermostat at meat-locker temperature.
Robert:
It's all about control over your environment, isn't it? Which brings us perfectly to our next category. Neurodivergence, sensory perception disruptions, and cognitive fatigue.
Which many people call brain fog. A giant ship can look loud and overwhelming from the outside, but structurally it offers something unique. Reason number 11, low sensory zones and certified ship.
Theresa:
And definitely more cruise lines are paying attention to this and some are certified for sensory considerations. And even the kids programs might have something for low sensory experiences. And as I mentioned before, the newer ships have more of these options and they're getting better and better about accommodating people with body disruptions.
So there is an organization called Autism on the Seas and cruise lines that partner with Culture City. So as I mentioned, many modern ships are officially certified sensory inclusive and some of the staff is trained in how to handle sensory activities and neurodivergent people, etc. So they could offer things like noise cancelling headphones, strobe reduction glasses, which that's a good thing to have if you have something like migraines or if it might cause a seizure.
That would be a good thing to ask for and you may already have your own. For more nervous or hyperkinetic people, they have fidget tools. But most importantly they designate specific areas of the ship as permanent low sensory zones.
You just need to be sure that other people respect that zone. So they have quiet lounges or solariums where music is banned and lighting is dimmed.
Robert:
And for people dealing with cognitive fatigue, early-stage dementia, or visual impairments, Reason 12 is huge. They're predictable layouts. When you travel overland, every day is a new visual puzzle.
A new hotel lobby, a new street grid, a new train station. It's exhausting for the brain. A cruise ship is an enclosed predictable grid.
Within 24 hours your brain maps it out. State rooms are in the middle, restaurants are aft, entertainment is forward. Once you learn that geometry, the mental tacks of navigating evaporate.
Theresa:
That's important for people who might suffer from fatigue. Ask your travel advisor for recommendations. And if you're lucky enough to find somebody who specializes in cruising for the disability community, you're in luck.
Maybe you want a state room near an elevator. Oh, be sure to check the deck plan before you go. Then you can get a good idea of the layout of the cruise ship.
So for those with specific visual or hearing disruptions, Reason 13 is the integration of assistive visual and auditory technologies. From Braille signage on every cabin door, an elevator button, to closed captioning on state room TVs, and safety briefings, to infrared assistive listening devices in the theaters, the compliance with accessibility standards is incredibly high. Some lines even have designated built-in relief areas with real grass for service animals.
And if you happen to need a sign language interpreter, you can also find that. Ask your travel advisor because that's something that needs to be requested well in advance of the sailing date.
Robert:
That attention to detail is remarkable. Now, let's talk about Reason 14, which is one of my personal favorites. Packing and energy autonomy.
I call this the FOMO cure. When you're at a traditional land destination, if the rest of your travel group goes off to see a landmark and you have to stay back in the hotel room because your energy is depleted, you feel left out. You look at a blank wall.
On a cruise, if you need to rest, you can lie on your cabin bed or sit on your private balcony and you are still looking at the ocean. You are still experiencing the movement. You can see the islands passing by.
You are in the travel experience, even while resting your body.
Theresa:
Oh, and another tip is when everybody is going out and exploring on shore, it's the perfect time to go sit by the pool or find a quiet place that doesn't stress you out because of the noise. You can go relax and have the space. Mostly to yourself.
You don't have to worry about finding a chair or finding a comfortable spot. Do those things that make you feel frazzled when everybody's off the ship. It's like your own personal yacht, or kind of.
So it is so true that you can get that FOMO, especially if that was the way you used to travel. I would say that was me for sure and it's still hard to change that because it's real. But to be safe, to not fatigue myself, I have to cut back.
Same with Robert. He's cut back. It's harsh, but it's better for us to do that.
That all leads to reason 15, the built-in escape hatch. If you decide to push your limits, say you go to the high-energy evening Broadway show or the lively main dining room and midway through your body says, we're done. The battery's at zero.
You don't have to call for an Uber, wait for a valet, or walk a mile down a city street, although some walking can be pretty far on a ship. You step out the door, walk to the elevator, and in a few minutes you are back your quiet, dark, safe room. You can brave environments that you might normally avoid because you have an escape option.
It's close. It's reliable. Most ships do have separate wheelchairs and you could call somebody, ask your waiter, and they will come with the wheelchair to assist you.
It's not for your use on the entire cruise, but it is to help you navigate.
Robert:
We're entering our homestretch here, and I want to focus on chronic pain, aging bodies, and oncology. People undergoing or recovering from intense medical treatments like cancer therapy. Reason 16 is something that offers relief.
Hydrotherapy and thermal sweets.
Theresa:
Oh, those thermal sweets are heaven. If you have rheumatoid arthritis, fibromyalgia, or you're managing stiffness from an old bone replacement, gravity is your enemy. Cruise ship spas almost always feature thermal sweets.
In fact, you can book a spa category of stateroom that gives you access to the spa. It's another thing to ask your travel advisor. They also have specialized treatments.
They might have a whirlpool, a jet stream pool, ice pool, massage, and all those other types of treatments or amenities like the heated lounger. It's a good place to relax, and again, it's nice to go there when everyone's off the ship.
Robert:
And getting down to those spas or up to the pool decks doesn't require a hike, thanks to reason 17. An abundance of elevators. On land, a lot of historic hotels might have one tiny elevator that fits two people, or a resort might require walking up long, sweeping outdoor staircases.
Cruise ships are designed around massive vertical elevator banks. If you have a bone replacement or severe joint degradation, you can completely bypass stairs for the entire vacation. Every single floor is equally accessible.
Theresa:
Another tip, if you have fatigue or your joints or bones hurt, request a stateroom near the elevator, so you can just walk right around the corner from your stateroom. So let's talk about reason 18, which is incredibly sensitive and important. Cancer-safe pampering.
For a long time, people undergoing active cancer treatments were turned away from traditional day spas because massage therapists weren't trained in the nuances of oncology, like managing compromised lymph nodes or fragile skin. Today, most major cruise line spa providers train their staff in certified oncology, massage, and skin treatments. It allows someone who's been po-prod-ed, po-prod-ed and treated like a clinical medical guinea pig for months, to safely experience human touch and pampering again.
And keep in mind, you can find, or if you don't find it, ask your travel advisor to let you know which kind of treatments are available in the spa.
Robert:
That's comforting to know. And keeping those same individuals safe is reason 19, rigorous hydration and sanitation standard. If you are immunocompromised, the world feels full of pathogens.
But cruise ships, especially after the public health overhauls of the last decade, are hyper-vigilant. There are hand-washing stations at every restaurant entrance, continuous air filtration upgrades, and constant visible sanitation of high-touch surfaces. Furthermore, you have immediate guaranteed access to clean water and food prepared under strict public health regulations.
It minimizes the risk environments.
Theresa:
And although the government has taken off some of the restrictions for the sanitary ratings of ships, cruise lines continue to test. It just makes sense for them. So finally, reason 20.
It's not a structural feature or a medical protocol. It's a cultural one. When you have a visible body disruption, whether you're walking with a cane, using a wheelchair, wearing a visible ostomy bag at the pool, or dealing with a prominent tremor, or rocking a bald head from chemotherapy...
Robert:
Tell me what you mean by that.
Theresa:
Well, the group is diverse. They come from all over the world, all over the country, and whether you're walking with a cane... I know I was on a ship and somebody came up to me.
They offered to help me. They offered me their cane to get around, and people can be very, very helpful. So there you'll see bodies of every shape, age, size, and ability level navigating the decks.
There's maybe more of a normalization, not that you should really normalize a disability, but there's an acceptance of different types of disabilities and health management. You aren't the sick person or the disabled guy on the deck because there's another one who is. You're just another passenger heading to the buffet or waiting for the show to start.
Robert:
That sense of belonging might actually be one of the most therapeutic benefits of all.
Theresa:
I think it is. When your body feels disrupted, finding a place where you can just be you without explaining yourself or fighting the architecture is a true vacation. But having said that, don't be offended or insulted if somebody asks you if they can help or what your disability is.
I wear an eye patch and people will assume that I have one disability and they will ask, and they're always polite. So don't just brush them off.
Robert:
Well, that's our 20 reasons. If you've been hesitant to travel because you feel like your body can't handle the logistics of the world right now, we highly encourage you to look at a cruise. Start small, maybe a three-night weekend itinerary, and see how the environment treats you.
Theresa:
And that's a good idea if you are traveling with a disrupted body. But in general, I would like to say the shorter the cruise, the more party the atmosphere is. So keep that in mind.
And of course, it depends on our cruise line. A three-day cruise on Holland Americas, that is likely to be the big party weekend. Although I will say that people of all ages party.
But their prime reason is to get away, not to just party hardy for the next three days. As always, we'll put links to some of the cruising resources we mentioned, like dialysis at sea and places where you could rent a wheelchair or oxygen or other equipment that you may not like to travel with on the airplane or just on your trip to the port. They'll all be in the show notes.
Robert:
Until next time, keep living the good life and travel on your own terms.
Theresa:
Bye everyone. See you next week.
(Transcribed by TurboScribe.)
Show Notes
Music
Links to Referenced Resources
TSA Cares
Book Your Cruise
Spoon Spending Chart
Autism on the Seas
Dialysis at Sea
Wheelchair Rental
Scootaraound
Special Needs Group
Living The Could Life - A 70-Day Workbook For Living Well After Body Change
18 min
July 28 Cruising with Body Disruptions and Disability
20 Reasons Why Cruising is a Great Vacation Option for Those Experiencing Body Disruptions
In this episode we explore the advantages of vacationing by cruise. Those with disabilities will appreciate the benefits of traveling in a way that reduces stress, and eliminates changing hotels and dealing with learning new surroundings every day. We share 20 reasons that show why if you are cruising with body disruptions and disability that this is definitely a choice that you should consider when making your vacation plans.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
Theresa:
Welcome back to living the good life the podcast where we redefine what adventure looks like When your body doesn't always follow the standard script. I'm Theresa and I'm Robert
Robert:
Today, we are tackling a massive topic We talk a lot on this show about the friction of travel the cobblestones that eat wheelchair wheels the airport security lines that exhaust people with chronic pain and The terrifying game of restaurant roulette when you have severe dietary restrictions
Theresa:
Oh, I understand the restaurant roulette so well I don't have Crohn's or one of those diagnosed diseases Since I've had my gallbladder removed I have Serious digestive problems where if I don't take my one magical pill, which doesn't always work It's best that I just sit in the bathroom all day nothing ruins your vacation faster than a digestive flare-up in a restaurant Especially in a city where you don't speak the language.
You can't find a public restroom You don't have a coin to pay for the public restroom or the restroom is down a narrow winding Staircase into the basement, especially bad for people like me with vision loss So sometimes the better option seems to just stay at home and get takeout or something like that But you have to deal with what you have Oh, that's the reality for so many of us dealing with what we call body disruptions Whether that's needing a wheelchair recovering from cancer treatments Managing sensory overload or navigating a joint replacement travel can feel very unfriendly
Robert:
It really can but today we're dedicating the episode to a travel style That a lot of people write off as old-school or cliche But it is secretly the ultimate hack for adaptive travel cruising and I will
Theresa:
Admit my guilt. I said that I would never ever No way Not in my life take a cruise because it was for old people novels other things after all we traveled on our own We bicycled across the North American continent. We bicycled in New Zealand and Mexico.
We hide think a trail We did all that other stuff. There's no way that I would ever take a cruise I figured I'd have to be playing bingo all day and doing a hairy leg Contest and all that sort of stuff that I had no interest in But I was invited on a cruise that went to French Polynesia and having been in New Zealand in the past I thought maybe I should suck it up and give it a try So I did so we've compiled a rock-solid list of 20 distinct reasons why a cruise ship is Structurally logistically and emotionally one of the best choices and most liberating Environments for someone with a body disruption and we aren't just talking about they have ramps
Robert:
Talking deep dive mechanics of how a floating resort changes the game Let's start off with the most obvious barrier for so many physical mobility
Theresa:
Okay, let's do that if you have mobility disruptions whether you're a full-time power chair user or a manual chair or You're just a few months out of a total knee or hip replacement The absolute foundation of a good trip is the terrain. Reason number one why cruising wins? It is a zero trip environment and That has the asterisks because it is the zero step on certain ships
Robert:
It's an architectural marvel when you think about it Modern cruise ships are built like many cities But without the curbs the thresholds between the interior corridors and the exterior Pool decks are usually flat or have very gentle Integrated ramp automatic doors open with a push of a button or a motion sensor for someone who uses a mobility scooter Just being able to roll from a theater to a restaurant without hunting for a hidden service elevator is incredibly freeing
Theresa:
And that accessibility doesn't end when the ship backs reason number two for going on a cruise is accessible shore excursions Historically if you wanted to tour an old European city or Caribbean island you had to cross your fingers the local bus could accommodate you.
Now cruise lines explicitly vet and Categorize their excursions. They have dedicated accessible features tours that use buses equipped with Mechanical wheelchair lifts. They map out the route so you know exactly what the paving is like before you book but having said that you need to be sure that the shore excursion that you are interested in is accessible and you can always ask your travel agent a person that you should consider Handling your arrangements especially if you have accessibility needs Right.
Robert:
It takes the guesswork out of it and speaking of heavy gear. Let's talk about reason three medical clearance for equipment People don't realize that you can essentially turn your stateroom into a specialized care room cruise lines partner with specialized medical supply companies if you need a hoist a hospital bed Oxygen concentrators or even a dialysis machine You can have it delivered directly to the pier and set up in your room before you even board The ship's guest services department coordinates the whole thing and actually it
Theresa:
There is a special access line that your travel advisor can help you with there is a company called dialysis at sea and Some people do their own dialysis, but before you do any of that be sure to consult with your medical professional and contact the special services and Also reach out to the access department of the cruise line. That ties in To reason number four and I do want to make a note here that older cruise ships may not have all the Accessibility as you will find on a newer cruise ship things change ships go into dry dock But you can't usually rebuild the width of a hallway or stairs So always look toward newer ships There are adaptive staterooms on board They aren't just standard rooms with a grab bar slapped on the wall a truly accessible cabin has a widened doorway a rolling shower With a fold-down bench and if there is not a bench you can request a chair They have lowered sinks lowered closet rats Emergency pull cords that connect directly to the ship's medical team and they have easier access into the stateroom itself and
Robert:
Let's not overlook the sheer physical relief of reason number five which applies to anyone with chronic pain or low energy No luggage hauling think about a traditional Multi-city vacation you haul bags to the car Out of the car through the airport onto a train up a flight of stairs at a boutique hotel on a cruise You tag your bags at the pier in Miami or Seattle From wherever you're departing and the next time you see them They're sitting inside your cabin you pack exactly one, but your room moves to a number of ports possibly in several different countries and
Theresa:
You never have to change that room and one really nice thing. I want to know about Seattle Ask your cruise line all of them will not tell you they will ship Your luggage to the airport if you are departing from the airport That leaves you time to explore the city unless you really want to spend Hours sitting at the airport and what I really like about the luggage hauling Aspect is not only are you not moving every day? But you know when you change a hotel you have to check out by a certain time Then there's several hours between checkout time and check-in time So you might go and have to sit and wait for your room to be ready at the next hotel on a cruise Your room the entire cruise and you do not have to do any kind of changing Until the end of the cruise and So unpacking is a one-time event and that is really nice especially if you have Joint pains or chronic fatigue You want to save up physical energy? so without having to do that every single day and moving and stressing out about transportation to your next hotel It's really nice that you just unpack once for the duration of your cruise Now, let's shift inside the body and this is your specialty.
Robert:
Let's talk about internal disruptions digestive issues celiac disease autoimmune conditions Cancer treatments that mess with your internal systems.
Theresa:
Well, I think some of that's your specialty Yeah, I guess yep as you're undergoing the cancer treatments and I guess it's embarrassing to say not only do I have vision loss I have digestive issues that nobody knows the answer to and That can be very annoying. So this is one thing good about cruising and I admit although I know I have a bathroom in my stateroom I go check out your public restrooms are especially before going to the dining area Just in case and that's something important So if I need a gluten-free diet again I would ask my travel advisor to make a note of that and the travel advisor or I would again Contact the access desk and let them know and do this well before your cruise Don't wait until the day you board although most would help you so the first thing I would do is go see the maitre d tell him or her what my Digestive needs were and ask them if they have a special menu and they could help you choose actually for the entire week Sometimes it's done 24 hours in advance It depends on whichever ship you're sailing with and you can also tell them about allergies Any other medical diets if you need like low sugar Just be sure to ask them early on Don't wait until the last day and say oh there were no choices and most menus already show gluten-free low sugar Vegetarian vegan so they are very happy to help you But the longer in advance you let them know the better and they can also do like low sodium Reno diets pureed whatever you need. They some also do like kosher.
Halal.
Robert:
Just let them know And that's reason number six Pre-vetted dietary customization that takes an immense cognitive load off the traveler You aren't explaining your illness to a new waiter every single night, right?
Theresa:
And that's a good thing. And especially if you're sharing a table, maybe You don't want everybody else at the table to know about your dietary issues or your health issues or medical issues so what happens if you have a bad day and that brings us to reason number seven, there's 24-7 our room service and bland food access now Hopefully you're not on a cruise ship that serves bland food every day. But if you do need it It's good to know that it's available so if your immune system crashes or My gut flares.
I don't have to worry about running out and finding a grocery store or ordering delivery I can press a button on my stateroom phone and at 3 a.m A crew member will bring me plain white rice clear broth plain crackers or chamomile tea it's built into the Infrastructure of all you may have to pay a fee for room service either anytime or during certain hours of the day reason number eight is a
Robert:
logistical godsend for anyone with GI issues bladder conditions or limited mobility and That's the proximity to clean private restrooms
Theresa:
Exactly and I mentioned that before if you were exploring a historic city center on land Finding a public restroom can be a multi-hour panic attack There are so many places that say well even here at home Restrooms for guests only and in that case I'd go with my caregiver Also Robert and order something quick to drink and tear into the restroom and hope that it's not one of those One restroom for the world setups, which I don't particularly like but when you're on the ship You're never more than a few hundred feet From a very clean public restroom You'll notice cleaners in there all the time You'll see a checklist on the door of the wall somewhere and even better if you're feeling unwell You have your own private bathroom and that is stacked with all of your own specific Personal care items and that's usually just an elevator right away.
So you are never Panicking about finding a restroom. But again, I always like to check out the restrooms Near the dining room near the theater near a place that I frequent often and that's besides the restroom Let's talk about that worst-case scenario What if it's more than just a flare-up?
Robert:
What if someone actually needs clinical intervention? That's reason number nine on board advanced medical centers These are not first aid stations with band-aids and ice packs Modern cruise ships have literal mini hospitals on the lower decks They are staffed by international doctors and nurses equipped with ICU level Stabilization gear x-ray machines lab equipment for blood work and cardiac monitor if you have a chronic illness Knowing that life-saving medical care is literally under your feet provides a level of psychological safety You cannot get at a remote beach resort
Theresa:
having said that Do be aware that these are not full hospitals and you should always consult with a doctor before if you have a chronic condition or Especially if you have a terminal condition There are people who want to do one last hurrah before I guess their expiration date comes up like the next week and they need to be evacuated from the ship and I can tell you that does not always make your fellow Passengers thrilled. So please don't put the other 3,000 or 6,000 or 900 Passengers in a position.
They don't want to be in just so you know Just in case you do have an accident or something serious happen because it can happen any time There is a morgue On the ship and they will take care of you Which at that point you probably don't really know so it does completely lower nervous system alarm bells to know that you have an option for medical care and Speaking of comfort. Let's add reason at climate control autonomy many people undergoing cancer treatments or Dealing with thyroid disruptions. Oh, do I get to add that to my list too?
Great They can experience extreme sudden shifts in body temperature and I will say that also happens with menopause So we don't want to not talk about the women who travel and might have that condition Oh in a hotel the central air can be controlled by a hotel cruise ships have Individual digital thermostats and I do want to be honest that Sometimes they are set too warm for me and you couldn't ask to have those Adjusted if you get a sudden chill or a massive hot flash you can change your immediate Environment in seconds and I'm one who likes to keep the thermostat at meat locker
21 min
July 21 Remembering that July Celebrates Disability Pride
A short history of of the disability movement
In this episode we explore the beginnings of the disability movement. July is disability month and a time to measure the progress. within the disability community. Some things we take for granted until we need them. Curb cuts are one example. Is it just an update to city planning? It should be, but many of the changes in buildings and in other public spaces is all about the disability movement. It started with a spark and is growing. But, there is still much work to be done.
Living The Could Life contains affiliate links. They don’t cost you anything, but we may earn a small commission if you use them. We may have been hosted on a trip, excursion or other travel-related event. We may have received or experienced a product for review. Any opinion is our own. AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES
AS AN AMAZON ASSOCIATE I EARN FROM QUALIFYING PURCHASES.
Transcript
Click Here for Transcript
[Speaker 2]
Welcome back to Living the Good Life, the podcast where we redefine what adventure looks like when your body doesn't always follow the standard script. I'm Teresa, and this month, July, is Disability Month. Our friends will discuss more information about the disability community in general.
Thanks for listening, hope you enjoy this show.
[Speaker 1]
You know, it's funny, when you walk down a city street today and you see a curb cut, you know, those little concrete ramps right at the corner of an intersection? Right. Or like when you grab a handrail in a public bathroom or you press one of those giant silver buttons to open an automatic door, there is this built-in expectation that it's all just, I don't know, civic engineering.
[Speaker 2]
Yeah.
[Speaker 1]
Like at some point, some benevolent city planner just looked at a blueprint, stroked their chin and went, hey, let's make this easier for everybody. Right. We tend to view the accessible world around us as this byproduct of natural passive progress.
Yeah, exactly. Like it's just the inevitable march of modern architecture getting, you know, kinder over time. Kinder, right.
It feels clean, it feels structural. But then, and this is what we're getting into today, you start actually digging into the history of disability rights in this country, and suddenly that little concrete curb cut isn't just concrete anymore.
[Speaker 2]
No, not at all.
[Speaker 1]
It is a battle scar. Like when you look at the accessible landscape, you are looking at a world that was absolutely not given to anyone by benevolent lawmakers. Yeah.
It was taken, demanded, and fought for in ways that are honestly jaw-dropping. It is the absolute definition of a hard-won revolution, and it completely shatters that illusion of passive progress, you know? Yeah.
You realize very quickly that accessibility is not a charity project. It is a profound matter of civil rights. Which is exactly what we are getting into today.
Welcome to the Deep Dive. We are honoring Disability Pride Month, which is celebrated every July to mark the passage of the Americans with Disabilities Act back on July 26, 1990. It's such an important milestone.
It really is. And for you listening, our mission today is to take you on a narrative journey. We've got an incredible stack of sources in front of us, ranging from a deeply detailed historical report from the U.S. National Park Service to several contemporary advocacy briefs that lay out the modern landscape of the movement today. And as we go through these sources, the core theme that just emerges over and over again is power. Yes. Power.
This is a history of fierce self-worth, community, and raw political power. I want to be really clear right up front. It is not a story about pity.
It has never been about pity. Okay. Let's unpack this.
Because to understand where the disability rights movement is today, and to understand the pride we see every July, you can't just start with the ADA in 1990. Right. That's too late in the timeline.
Exactly. You have to look at the radical lengths people had to go to just to force the government to enforce the laws that had already passed. And that takes us back to 1973.
Yeah. The Rehabilitation Act of 1973. Specifically, there's this tiny provision buried inside it called Section 504.
Right. Our sources point out that Section 504 is incredibly brief. It's less than 100 words long.
Which is wild for a piece of legislation that important. It really is. It essentially just mirrored the Civil Rights Act of 1964, stating that no qualified individual with a disability could be excluded from or discriminated against in any program receiving federal funds.
So on paper, less than 100 words officially recognized disability as a civil rights category for the very first time. On paper, yes. But here is the critical gap between legislation and reality.
A law is entirely useless if there are no practical regulations written to enforce it. Oh, right. Because how do you enforce a vague idea?
Exactly. You can say no discrimination all you want, but what does that actually mean for a university or a federally funded hospital? Right.
The logistics of it. Yeah. And the organizations that would have to comply with this were pushing back hard.
They didn't want to spend the money to retrofit buildings with ramps or provide braille materials or hire sign language interpreters. They argued the cost of compliance was just unreasonable. So wait, they just stalled.
Like for years, the government passes a civil rights law and then just refuses to write the instructions on how to actually follow it. Literally for years. It gets kicked down the road from one administration to the next.
And by 1977, it lands on the desk of Joseph Califano. He was President Jimmy Carter's Secretary of Health, Education and Welfare, HUW. And Califano refused to sign the regulations.
He was actively meeting with lobbyists who wanted to water the rules down. Wow. So the disability community, organized by a group called the American Coalition of Citizens with Disabilities, they give Califano a massive ultimatum, right?
They do. They say, sign the regulations unaltered by April or resign. And he obviously doesn't either.
Yeah. And that triggers April 5, 1977. The 504 sit-ins.
Yeah. Protests erupt at 10 regional HUW offices across the country. But the one that fundamentally changed history happened in San Francisco at the federal building at 50 UN Plaza.
And this is where the story gets so intense. It really does. Activists led by these brilliant organizers like Judy Heumann and Kitty Cohn, they marched right into the building, occupied the offices and simply refused to leave.
And I want to emphasize this for everyone listening. This wasn't, you know, a weekend protest where people hold signs for a few hours and then go home for dinner. It lasted 26 days.
To this day, it remains the longest peaceful occupation of a U.S. federal building in history. But I have a genuine question about the mechanics of this, because I am just marveling at the sheer logistics. Oh, the logistics were a nightmare.
Right. How do people with severe, complex medical needs survive an occupation in a hostile building? Because the federal government didn't just let them stay.
The sources note the police cut off the hot water and the phone lines almost immediately to try and freeze them out. It's an incredible logistical feat, and it came down to pure, unadulterated solidarity and ingenuity. You had people sleeping on hard office floors, which meant risking severe, life-threatening bed sores.
Oh, man. You had people choosing to forgo their personal aids and vital medical equipment from home. And to keep critical medications cold when they had no access to a kitchen or running electricity in certain parts of the building, Katie Cohn literally built a makeshift refrigerator.
Wait, how? She taped a cardboard office box around a running window air conditioning unit. That is amazing.
There's a true MacGyver stuff right there. Yeah, exactly. And what about the cut phone lines?
How did they communicate with the outside world if the police cut them off? Deaf protesters went to the high windows of the federal building and used sign language to communicate entirely in the open with supporters standing down on the street below. Oh, wow.
Yeah, they bypassed the phone system entirely. See, that is the defining moment for me in these historical documents, the cross-movement solidarity, because they weren't in that building alone. No, not at all.
The broader civil rights community recognized the shared struggle and showed up in a massive way. The Black Panther Party, recognizing the intersection of systemic oppression, they delivered hot meals to the protesters every single day of the occupation. It's such a powerful image of mutual aid.
It really is. And the International Association of Machinists Union, the IAM, they stepped in when a delegation of these protesters eventually flew to Washington, D.C. to pressure the White House directly. Right, because once the organizers flew to D.C., they hit a massive physical barrier. There was zero accessible public transit for wheelchair users in the Capitol. Zero. Yeah.
The buses didn't have lifts. The subway wasn't accessible. So the Machinists Union rented a massive box truck.
[Speaker 2]
Yeah.
[Speaker 1]
And they transported wheelchair users around Washington in the dark in the back of this truck just so they could physically corner politicians in their offices. What's fascinating here is the sociological shift that happened inside that San Francisco building over those 26 days, because up until this point, disabled people were often incredibly isolated from one another due to the very lack of accessibility they were fighting against. Oh, that makes sense.
Right? Someone who is blind and someone who uses a wheelchair might face completely different daily barriers. They rarely had accessible public spaces where they could physically gather, share ideas and organize.
But suddenly you have this incredibly diverse cross-section of humanity locked inside a federal building together for nearly a month. Exactly. This isolated community was forced into a shared space.
They shared stories. They managed each other's complex medical needs. And in doing so, they forged a unified, cross-disability political bloc.
They found their common ground. They stopped being fragmented subgroups and became a singular, undeniable force. They realized their struggles shared the exact same root cause, which is systemic ableism.
And it worked. The national media caught wind. The pressure became insurmountable.
And on April 28, 1977, Joseph Califano gave in and signed the regulations completely unchanged. It's a monumental victory. Yeah.
But as we see in the sources, 504 had a massive limitation. It did. It only protected people in federally funded programs.
So if you wanted to go to the post office, you were fine. But if you wanted to eat at a private restaurant or work at a private company or just ride a private bus, it was perfectly legal for them to tell you no or simply have a flight of stairs you couldn't climb. Yeah.
A huge loophole. To protect disabled people in the private sector, they needed a new law, the Americans with Disabilities Act. And that explains why by 1990, history is basically repeating itself.
Right. The ADA is stalled in congressional committees. Private business interests are complaining about the hypothetical cost of building ramps and widening doors.
The legislation is just stuck. So the community mobilizes again. March 12, 1990.
The Capitol crawl. Gives me chills just thinking about it. Over a thousand protesters march on the U.S. Capitol. And this is the visual that I think perfectly encapsulates the physical toll of this fight. Over 60 activists get to the bottom of the Capitol steps. All 83 stone steps.
And they abandon their wheelchairs. Yeah. They leave their crutches at the bottom.
And they begin to physically pull their bodies up the steps, crawling to the doors of Congress. It was a visceral, undeniable demonstration of the barriers that society had artificially placed in front of them. For decades, society had hidden disabled people away in institutions.
Out of sight, out of mind. Exactly. This action forced lawmakers and the cameras of the world to watch the sheer physical toll of ableism in broad daylight.
You couldn't look away from the fact that the literal seat of American democracy was physically inaccessible to millions of its citizens. And among them was an eight-year-old girl named Jennifer Keelan Chaffins, who had cerebral palsy. She pulled herself up those stone steps alongside the adults.
And there's this famous, just gut-wrenching quote from her where she declares, I'll take all night if I have to. It broke the legislative logjam. It provided the indisputable moral clarity needed to push the bill forward.
And just a few months later, on July 26, President George H.W. Bush signed the ADA into law. Here's where it gets really interesting, though. OK.
We've spent this first half of the conversation talking about physical barriers. The steps to a building. The width of a door.
The curb cut. But the disability rights movement didn't stop in 1990. The movement evolved.
Because what happens when the barriers and the disabilities themselves aren't immediately visible to the eye? This is arguably the most significant evolution of modern disability advocacy. Yeah.
The original legal framework, like the ADA, was largely built around physical and apparent disabilities because those were the barriers that could be, well, measured with a tape measure. Right. But a massive, massive portion of the community lives with non-apparent conditions.
We're talking autoimmune diseases, chronic pain, mental health conditions, neurodivergence. Right. And as Disability Pride Month really started gaining global momentum around 2015, which was the 25th anniversary of the ADA, you see this distinct shift in the advocacy briefs.
Very much so. The focus really began to expand to encompass these non-apparent disabilities, which is perfectly captured by the history of the Disability Pride Flag. The flag is such a brilliant case study in how this community operates.
It was originally created in 2019 by a disabled artist named Anne McGill. It featured bright, zigzagging lightning bolt stripes over a dark background. But the version of the flag you see today is actually redesigned from 2021.
And the reason it was redesigned is so perfectly aligned with everything we're talking about. It's the ultimate lesson in meta-accessibility. The 2019 flag looks striking, but the community quickly realized that the zigzag pattern, combined with the high contrast neon colors, was actually causing visual sensory trigger.
Yeah. As people scrolled past it on social media, the design was inducing migraines and triggering symptoms for people with epilepsy or visual processing disorders. So a flag meant to symbolize the disabled community was physically inaccessible to a portion of the people it was supposed to represent.
So McGill didn't get defensive. She listened to the community, collaborated with folks who have visual processing disorders, and completely redesigned it in 2021. She straightened the stripes into a diagonal band, softened the contrast, and reordered the colors so they would be red-green colorblind friendly.
Which is just fantastic. And then she placed the design in the public domain, meaning anyone can use it freely forever. And the visual language of that flag is incredibly deliberate.
It doesn't just lump everyone together into one homogenous group. Right. It intentionally maps out the distinct experiences within the community.
The background of the flag is a faded charcoal or black, which represents mourning. It's a somber acknowledgement of the victims of ableist violence, abuse, and systemic neglect. It grounds the pride in the reality of the struggle.
And then cutting across that dark background is a diagonal band of five colors, representing how disabled people cut across all demographics, borders, and identities. Yes. Like you have the white stripe, which specifically represents non-visible, invisible, and undiagnosed disabilities, people fighting battles no one else can see.
And the gold stripe represents neurodivergence and cognitive disabilities, like autism and ADHD. The blue stripe represents mental health and psychiatric conditions. The red stripe is for physical disabilities.
And the green stripe represents sensory processing, as well as the deaf and blind communities. Exactly. By separating the colors but keeping them united on one flag, it acknowledges that an autistic person's daily needs might look completely different from a wheelchair user's needs.
But their fight for bodily autonomy and societal accommodation is the exact same fight. If we connect this to the bigger picture, we are moving from the macro symbolism of a flag down to the micro daily reality of living with these conditions. Because it's one thing to have a white stripe on a piece of cloth.
It's another thing entirely to try and survive a random Tuesday when your immune system is attacking your own body. But everyone at the office thinks you look completely fine. And this is where the sources dive into something called spoon theory.
Yeah, coined by Christine Miserandino back in 2003. She was sitting at a diner trying to explain to a friend what the daily reality of living with lupus, which is an invisible chronic illness, actually felt like. The best way I can describe spoon theory for you listening is to think of it as a strict, non-negotiable energy budget.
A good way to frame it. If you are a non-disabled person, you generally wake up with a seemingly infinite or at least highly renewable supply of energy. You don't have to consciously budget the physical and cognitive energy it takes to get out of bed and take a shower.
You just do it. But if you have a chronic illness or a non-visible disability, if you are a spoonie, as the community calls it, you start every single day with a finite number of spoons. Let's say you get 12 spoons for the whole day.
And the crucial part of the theory is that every single action costs a spoon. Taking that shower, that costs a spoon. Commuting on a crowded subway.
That might cost three spoons because of the sensory overload and the physical strain of standing. Having to explain your invisible condition to a skeptical co-worker who wonders why you're taking a break, that's another two spoons drained just from the emotional labor. So before you've even sat down at your desk at 9am, you might only have six spoons left to get through the entire rest of your day, including making dinner and interacting with your family.
It requires this intense, relentless pacing and rebudgeting. And our sources note this is a massive cultural shift right now, especially with the influx of people dealing with long COVID, who are suddenly grieving their previous energy levels and learning how to operate on a stripped spoon budget for the first time in their lives. Now imagine taking someone who is already carefully rationing their spoons and putting them into one of the most high-stress, unpredictable environments imaginable in an airport.
Oh, it's a nightmare scenario. Truly. Imagine navigating the sensory nightmare of TSA, gate changes and flight delays when you are critically low on spoons, and your disability is completely invisible to the airport staff rushing you along.
You might desperately need a bit of extra time to board, or you might need clear verbal instructions because of cognitive overload, but you don't look disabled to the gate agent. This specific friction point is where we see practical solutions emerging, like the Hidden Disability Sunflower Lanyard. It was created in 2016 by the accessibility team at Gatwick Airport in the UK.
It's a simple green lanyard with yellow sunflowers. And the mechanics of it are brilliant. It acts as a discrete signal to trained transit and airport staff that the person wearing it has a non-visible condition.
Right. It doesn't mean the person wants to be patronized or treated like a child. It just signals that they might need extra processing time, a bit of physical space, or a slightly different approach.
And what makes the Gatwick model work is the training. Airports and businesses actually pay for training modules so their staff understand the behavioral cues associated with the lanyard. Importantly, for the user, it operates entirely on their honor system.
You don't have to show invasive medical paperwork to a barista or a TSA agent to get one. But reading through the briefs, I found myself wondering, doesn't a bright green lanyard with yellow flowers kind of defeat the purpose of being discrete? Like it might signal the staff, but it also signals everyone else in the terminal.
That is a very real concern, often referred to as lanyard overload. A lot of people do not want to broadcast their vulnerability to an entire terminal of strangers, especially if they are traveling alone. Yeah, that makes a lot of sense.
So the system has adapted. You can use enamel lapel pins or discrete pocket cards that you just quietly hand directly to an agent. You can also bypass the physical markers entirely on the administrative side.
How does that work? You can register with TSA Cares 72 hours prior to your flight to get a passenger support specialist to guide you. Or you can add special service request codes like the DPNA code, which stands for Disabled Passenger Needing Assistance directly to your flight itinerary under the Air Carrier Access Act.
The system is designed to give you options based on your comfort level. These tools are incredible, but they reveal a really fragile underlying mechanic. They rely heavily on public trust.
An honor system only works if the public honors it. And right now that trust is actively fraying. Which brings us to the very real systemic crackdown we are seeing right now on pre-boarding protocols.
This part of the research genuinely fired me up. I don't blame you. Because we are seeing airlines enforce strict one-companion rules, forcing people to check in at the gate desk to verbally justify their need to pre-board or outright interrogating passengers.
And the reason they are doing this is entirely rooted in viral social media trends. It's incredibly frustrating. You have influencers and able-bodied people posting travel hacks on TikTok bragging about how to ask for a wheelchair or claim an invisible disability just to board early and secure overhead bin space.
It is the commodification of accessibility. It fundamentally misunderstands that accommodations are not VIP perks or travel hacks. They are equalizers necessary for basic participation.
And the result is what I look at as a literal spoon tax. Because able-bodied people misuse this system for convenience, the airlines get skeptical of everyone. So now a traveler who legitimately has an invisible condition, who is already running on a deficit of energy, is hit with this extra tax.
Yes. They are forced to constantly self-advocate to perform their disability and to prove their medical reality to a gate agent who is looking at them with total skepticism. It forces disabled people to bear the burden of proof in a public, often humiliating way, just to access the basic accommodations they are linkedly entitled to.
This raises an important question. If you are listening to this and you want to help, how do you actually advocate without misusing these delicate accessibility systems? How do you become a true ally rather than just taking up space?
The answer from the advocacy briefs is pretty clear. You focus on the systemic level. You support the organizations that are doing the heavy lifting so that individuals don't have to spend their daily spoons fighting gate agents.
Yeah. But it helps to understand how these different groups operate because they tackle the problem from completely different angles. Exactly.
For instance, if you want to change the culture around non-visible conditions, you look at groups like the Invisible Disabilities Association, the IDA. Their primary mechanism is educational lifting. Kind of.
They run campaigns to normalize invisible conditions so that individuals don't have to constantly explain themselves to skeptical employers or family members. And if you are looking at how to build actual political power, you have the AAPD, the American Association of People with Disabilities. Their methodology is about civic engagement.
They focus on turning the disability community into a cohesive voting bloc, lobbying lawmakers in Washington to ensure that accessibility is written into federal policy, not just left to the goodwill of corporations. Then you have groups fundamentally changing the philosophy of care, like ASAN, the Autistic Self-Advocacy Network. What makes ASAN so vital is their operating model.
It is run entirely by and for autistic individuals. Which wasn't always the norm, right? Not at all.
For decades, autism advocacy was dominated by groups looking for a cure or focusing on behavioral therapies that forced autistic people to mask their traits. ASAN flipped that entirely. Their methodology is self-determination, advocating for societal accommodation of neurodivergence, rather than trying to fix the person.
And when policy and education aren't enough, you need legal teeth. That's where the NDRN, the National Disability Rights Network, comes in. They provide actual legal assistance.
They are the ones who will step in and sue a state agency or a corporation on behalf of individuals when those civil rights laws we talked about earlier are violated. It is an entire ecosystem of advocacy, working simultaneously on education, policy, self-determination, and legal enforcement. So what does this all mean?
We've covered a massive amount of ground today. We really have. We started in 1977 with Kitty Cone taping together a cardboard refrigerator and Judy Heumann sleeping on the floor of a federal office building just to force the government to acknowledge their basic humanity.
[Speaker 2]
Yeah.
[Speaker 1]
We saw the undeniable physical toll of the 1990 Capitol Crawl. And we've tracked how that radical spirit has evolved to protect the invisible, the neurodivergent, and the chronically ill today, demanding that they be believed and accommodated without having to pay a daily spoon tax. It's a history that proves the world can be reshaped when a community refuses to be ignored.
But as we wrap up, I want to leave you with a thought about where this fight goes next. I'll go. We spend a lot of time talking about concrete curb cuts and physical ramps, but right now we are building an entirely new world from scratch, the digital world.
As we construct the metaverse, as we integrate artificial intelligence into hiring algorithms, and as virtual reality becomes the new workplace, we have to ask, who is writing the pad? Are we accidentally building digital stairs? That is such a good point.
Because if we don't code accessibility into the foundation of these new frontiers right now, we're going to need a digital Capitol Crawl tomorrow. The frontier of disability rights isn't just in physical buildings anymore. It's in the architecture of our technology.
And it's up to all of us to ensure the future is built with the doors wide open.
(Transcribed by TurboScribe. Go Unlimited to remove this message.)
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Show Notes
Music
Links to Referenced Resources
TSA Cares
Being Huemann
Spoon Spending Chart
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